I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: iolaire on March 15, 2021, 08:47:56 AM
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Johns Hopkins is running a Transplant Vaccine study, to sign up see https://transplantvaccine.org/
They sent an email today to share with you our first wave of findings which has been under publication embargo, but just this morning, they were published in the Journal of the American Medical Association. Here is the link: https://jamanetwork.com/journals/jama/fullarticle/2777685
From a quick read I feel like the following is most important relating to the first dose response:
Transplant recipients receiving anti–metabolite maintenance immunosuppression therapy were less likely to develop an antibody response than those not receiving such immunosuppression therapy (37% vs 63%, respectively; adjusted incidence rate ratio [IRR], 0.22 [95% CI, 0.15-0.34], P < .001; Table). Older transplant recipients were less likely to develop an antibody response (adjusted IRR, 0.83 [95% CI, 0.73-0.93] per 10 years, P = .002). Those who received mRNA-1273 were more likely to develop an antibody response than those receiving BNT162b2 (69% vs 31%, respectively; adjusted IRR, 2.15 [95% CI, 1.29-3.57], P = .003). This association was similar in a sensitivity analysis limited to those tested 14 to 21 days after vaccination (n = 245; adjusted IRR, 2.29 [95% CI, 1.32-3.94], P = .003).
Discussion
In this study of immunogenicity of the first dose of the mRNA SARS-CoV-2 vaccine among solid organ transplant recipients, the majority of participants did not mount appreciable antispike antibody responses. However, younger participants, those not receiving anti–metabolite maintenance immunosuppression, and those who received mRNA-1273 were more likely to develop antibody responses. These results contrast with the robust early immunogenicity observed in mRNA vaccine trials, including 100% antispike seroconversion by day 15 following vaccination with mRNA-12735 and by day 21 following vaccination with BNT162b2.6
mRNA-12735 = Modena
BNT162b2.6 = pfizer-BioNtech
If you have a choice it sounds like Modena vaccinations are more likely to develop antibody responses.
I'm interested in know which drugs fall under the "anti–metabolite maintenance immunosuppression therapy" category. A few quick google searches don't make it clear.
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Thanks so much for this information, iolaire. In doing some quick, not too thorough research, and in looking ONLY at the usual cocktail of immunosuppressants that most of us get, prednisone is a corticosteroid, tacrolimus is a calcineurin inhibitor, but it's mycophenolic acid that is in a class of drugs called "antimetabolite immunosuppressant". So, that sucks. But please don't take my word for it as I have not had loads of time to dig any deeper.
I did have the Moderna vaccination, but I wasn't given a choice. I've had only the first dose with the second due 1st April.
Still, none of this is a surprise. I have always suspected that if you are actively suppressing your immune system, anything you do to "jump start" it surely must have diminished results. That's just common sense to me. That said, I will take anything offered that might increase my chances of surviving covid, even if said chance is smaller than hoped.
Again, thanks for posting this. Please post more info when/if you receive it.
What are your general thoughts/feelings about this? I'm rather disappointed, truth be told.
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"These findings of poor antispike antibody responses in organ transplant recipients after the first dose of mRNA vaccines suggest that such patients may remain at higher early risk for COVID-19 despite vaccination. Deeper immunophenotyping of transplant recipients after vaccination, including characterization of memory B-cell and T-cell responses, will be important in determining vaccination strategies as well as immunologic responses after the second dose."
And what does this actually mean? What do you all think will be DONE for us as a result of these poor results? Or, are we just going to be conveniently ignored?
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MooseMom thanks yes that’s Mycophenolic acid. Another person on the Facebook group posted a link that made it clear.
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MooseMom thanks yes that’s Mycophenolic acid. Another person on the Facebook group posted a link that made it clear.
OK, good. I didn't want to lead anyone astray.
Upon thinking about all of this a bit more, I'm more than disappointed. I'm gutted. I have tried, and mostly succeeded, in holding back my despair for a year now. That particular dam now has an enormous crack in it. I don't dare hope that the second dose will be any more promising than the first. I really don't see anything being done for us. I think we will be abandoned.
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MooseMom thanks yes that’s Mycophenolic acid. Another person on the Facebook group posted a link that made it clear.
OK, good. I didn't want to lead anyone astray.
Upon thinking about all of this a bit more, I'm more than disappointed. I'm gutted. I have tried, and mostly succeeded, in holding back my despair for a year now. That particular dam now has an enormous crack in it. I don't dare hope that the second dose will be any more promising than the first. I really don't see anything being done for us. I think we will be abandoned.
Yes its scary, but I don't know if its time to give up all hope (i.e. I hope its not time to give up hope). Is only at the first dose so we can hope the second does something more. Additionally we have this study going on so we might learn enough to request a second dose or do something else. We also will benefit as the community spread decreases.
On a side note the LabCorp order for the antibody test was for:
164090 SARS-CoV-2 Semi-Quantitative Total Antibody
I'm personally happy we have a measure of if we are protected. Also I've been a pessimist regarding "getting back to normal." I'm expecting that the mask use on my part will be needed when exposed to unknown people for sometime as community spread is ongoing and new variants are in the wild.
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I fully expected the vaccine not to be as effective for us. That's just common sense.
I also fully expected to still wear masks and to socially distance after vaccination. I was prepared for that.
I was not, however, prepared to learn that there was no "appreciable antispike antibody response". I realize that may change after the second dose, but I don't honestly see why it should. We'll still be taking the same mycophenolic acid.
The only silver lining here is that they seem to have found the exact agent responsible for the muted/"no-appreciable" response. I confess that I have not read the "Method" section so don't know exactly how they made this discovery, but I also don't know what any bright spark vaccine maker is going to do with this knowledge.
If the vaccine turns out to be a giant dud for us, I really don't know how I will go about the rest of my life. Will I ever see my son again? I haven't seen him since Oct 2019. I suppose we all will be asking these same questions.
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Thank you so much for sharing this study, iolaire. :thumbup; Seriously, a world of thanks.
I am not a scientist but the results of this study align with my expectations to sadly tell the truth. Knowing from the beginning it wouldn't be as effective in the immuno-suppressed versus the regular population, it was simply a matter of what degree of antibody spike. I expected "something", or at least a bit of protection, than this dismal result though. If you think about it, we typically receive high dose vaccines (compared to the regular population) to initiate that antibody spike (and some have to be redone) so, what should be different about this, you know?
Perhaps the best scenario is that the normies get vaccinated, get the antibody spikes that denote "success" of a vaccine in those populations, and then it is just up to the at-riskers manage the best we can with what is available, until more studies come out, and more vaccines hit the market. I just don't know. It is as if we are expected to not have lives or something. I know that mycophenolate sodium isn't leaving anytime soon and this is completely out of my hands.
I was supposed to have a meeting with the tx team about the vaccine (my GP requested I do it), but now I am like, why bother? ???
At least I know Moderna is the way to go IF I have a choice. But then... am I even allowed a choice or will I be labelled one of those "vaccine shoppers" who should "take what they can get"? Will this even be acknowledged as beneficial information if I do push for a particular kind? Now I just have more questions and related neuroses...
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I was supposed to have a meeting with the tx team about the vaccine (my GP requested I do it), but now I am like, why bother? ???
Still get in line to receive it and be proud of picking and choosing if you have a choice. On the Facebook one person says they see better response after the second shot, where another says he talked to his transplant team with numerous people in the study and they said it doesn't look good but he was told age has a big factor. There are all kinds of unknows. For example we know the vaccine doesn't always prevent infection but some studies show that infection in vaccinated populations result in less significant effects.
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How quickly do you all suppose this information is picked up by transplant clinics?
Yes, we've been told that the vaccine isn't necessarily expected to prevent covid infection but rather, to reduce the need for hospitalization or services of a morgue. But can we tx people hope for even that much?
Is there any research going into what the next step should be? A third dose?
I don't trust other people enough to provide me with immunity via the herd, but I suppose I'm going to have to hope they will care enough. But they'll just tell us to stay indoors and permanently shield.
You Tea, let us know what your tx team has to say. And I agree with iolaire; if the Moderna vaccine gives you even the slightest increase in protection, you shop for it. It's no one else's business, and you owe an explanation to no one besides your medical team.
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... Here we also have quite a lot of information available about all sorts of different vaccinations plus reports of many different reactions to particular vaccinations etc., all there ready to make anyone feel extremely insecure and nervous about "it"... but perhaps each individual reaction might be really dependant on the fitness, body-size, general health, health-history etc. of each participant ? What do you think? :grouphug;
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Kristina, the Johns Hopkins study to which iolaire is referring doesn't look at the safety of the vaccine, rather, it looks at the efficacy of it in transplant patients. This is the study we've all been waiting to read. Basically, the conclusion is that for transplant patients who are taking the immunosuppressant mycophenolic acid (Myfortic) or any other immunosuppressant in this drug group (antimetabolic immunosuppressant), after the first dose of the mRNA vaccine, there seems to be no real measurable antibody response. That may change after the second dose.
This study was published just today, so we are all still digesting it. It doesn't look like the vaccine protects us much at all, IF at all, at least not after the first dose. It's very disappointing.
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Still get in line to receive it and be proud of picking and choosing if you have a choice. On the Facebook one person says they see better response after the second shot, where another says he talked to his transplant team with numerous people in the study and they said it doesn't look good but he was told age has a big factor. There are all kinds of unknows. For example we know the vaccine doesn't always prevent infection but some studies show that infection in vaccinated populations result in less significant effects.
Once the vaccination initiative opens up to high risk under-65's (new guidelines have been released by the government and have transplant recipients at the top of Phase 2; so between April to July), I will get in line. See what happens next, right?
Perhaps by then new data will come out in regard to the second shot. As well, it seems Moderna is already looking at the immunogenicity (new word for me today) of the "next generation" of its vaccine as well as boosters. Not exactly great news right now, but it is still something. Not related to tx patients at all but still: https://www.cbc.ca/news/health/moderna-testing-covid-vaccine-1.5950322
You Tea, let us know what your tx team has to say. And I agree with iolaire; if the Moderna vaccine gives you even the slightest increase in protection, you shop for it. It's no one else's business, and you owe an explanation to no one besides your medical team.
Definitely, I will let you know. The appointment is in two weeks and hopefully it is not cancelled. :'( Still, I am sure I can arrange a telephone call in its place to really sort it out.
You do raise a great point as well - how quickly will this data be picked up by transplant clinics? I'd like to know. :P This is considerably big news so I hope soon.
Ugh, this is just an emotionally defeating day. Bad hair appointment, this news, Ontario Hospital Assoc. announcement that we're in a third wave, appointments in the air, life becoming a chronic dumpster fire too large to escape or make plans to move ahead. I know I'm not the only one (as expressed here!) but ugh.
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Yeah, it's been a crap day, right? I have had only one haircut in the past year. The last time my hair was this long was when I was in high school. Not a good look.
I'd been enjoying the past couple of spring like days and have been out gardening. Today it snowed. Crap day.
Europe is in a third wave, so I'm not surprised that Canada might be, too. It's only a matter of time before the US sees the same. Crap crosses the pond.
I learned two new crap words today, "antimetabolic" and "immunogenicity". Wish I didn't have to know that.
I'm going to bed, ready for this day to end.
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How often do transplant patients receive steroid injections or pills? And what is the size of the dose, compared, say, to a cortisone shot in the wrist for a mild case of osteo? The wrist shot, given every three months, is a small, localized dose, but I'm guessing that transplant patients receive larger and more frequent doses. Is this correct?
In any case, I sympathize with the quandry you are in. But don't despair too soon. The second shot may provide adequate protection.
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Kristina, the Johns Hopkins study to which iolaire is referring doesn't look at the safety of the vaccine, rather, it looks at the efficacy of it in transplant patients. This is the study we've all been waiting to read. Basically, the conclusion is that for transplant patients who are taking the immunosuppressant mycophenolic acid (Myfortic) or any other immunosuppressant in this drug group (antimetabolic immunosuppressant), after the first dose of the mRNA vaccine, there seems to be no real measurable antibody response. That may change after the second dose.
This study was published just today, so we are all still digesting it. It doesn't look like the vaccine protects us much at all, IF at all, at least not after the first dose. It's very disappointing.
Many thanks about the information MooseMom, it is very much appreciated and I do stand corrected ... and hopefully the second "shot" of vaccination protects us a bit better? Fingers crossed ! I was told that my first "Pfizer"-vaccination protects me up to 80% and hopefully my second vaccination-"shot", which should "come along" next months protects a bit better and hopefully the side-effects are not too bad ...
Many thanks again for your kind input and I do hope you feel a little better today? Please take care and I send you my best wishes from Kristina. :grouphug;
How often do transplant patients receive steroid injections or pills? And what is the size of the dose, compared, say, to a cortisone shot in the wrist for a mild case of osteo? The wrist shot, given every three months, is a small, localized dose, but I'm guessing that transplant patients receive larger and more frequent doses. Is this correct?
In any case, I sympathize with the quandry you are in. But don't despair too soon. The second shot may provide adequate protection.
Hello enginist,
I have not been prescribed or given any cortico-steroids after being diagnosed with a severe allergy to "them", which came about during a hospital-stay ... and ... I have also heard that cortico-steroids can eventually cause problems with bone-density in some people ...
Take great care and I also send you my best wishes from Kristina. :grouphug;
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How often do transplant patients receive steroid injections or pills? And what is the size of the dose, compared, say, to a cortisone shot in the wrist for a mild case of osteo? The wrist shot, given every three months, is a small, localized dose, but I'm guessing that transplant patients receive larger and more frequent doses. Is this correct?
In any case, I sympathize with the quandry you are in. But don't despair too soon. The second shot may provide adequate protection.
So, I can't really speak for those taking steroids as regular post-tx maintenance, as I am on a steroid-free regimen. They were discontinued 6 months after transplant.
Immediately after transplant, patients receive high doses of steroids, but they are slowly tapered down. Typically (at least what I experienced in the early days and what I hear from others) it is a maintenance dose of 5 mg of prednisone per day. Unless there is a rejection issue, where IV steroids are administered, there are no injections.
Hope others will chime in with some better info.
MooseMom, all I can do is send a virtual hug. :cuddle; Perhaps if we spell crap with a K it will seem more fashionable and funner. Like Krap Day Klub.. KDK. "Going to my KDK meeting, ciao!"
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Typically (at least what I experienced in the early days and what I hear from others) it is a maintenance dose of 5 mg of prednisone per day.
I'm at 5 mg and talked to my doctor about it last year. He made some comment that people still on prednisone fare better transplant wise. I do have weakening of the bones as seen on DexaScans and have had that since the 1990's when my lupus was active and I was on high doses of prednisone.
FYI I should get my second antibody test for this study on the 25th before my second shot and will have the results in a day or so.
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Enginist, UT is correct in that generally, immediately post tx, a larger dose of prednisone is given (in my case, 30m daily) and is fairly quickly tapered down to a low maintenance dose (in my case, 5mg daily). That's quite a small dose in the grand scheme of things. I take a 5mg tablet in the morning.
kristina, the published study indicates that what you were told about the first dose giving you 80% protection may be incorrect. It may be true for the healthy general population on which these trials were conducted, but transplant patients were not included in these trials, so no one had any way of knowing enough to make that claim to you. That said, we do not know yet if an immune response will be coaxed out of a tx patient's immune system after the second dose. Maybe that second dose does the trick. I am assuming there will be follow up trial studies done after the people who are included in the trial receive their second dose.
But I want to make clear that for purposes of this discussion, the report that iolaire so kindly shared with us indicates that steroids are not the problem here. The immunosuppressant most tx patients take, mycophenolic acid or another drug in that class, seems to be the medication that thwarts an antibody response from the Pfizer and Moderna vaccines. If you are on a steroid free protocol but still take mycophenolic acid, the results of this study indicate that you will have very little protection from the vaccine after the first dose.
If I have misunderstood something, please let me know.
KDK
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Typically (at least what I experienced in the early days and what I hear from others) it is a maintenance dose of 5 mg of prednisone per day.
I'm at 5 mg and talked to my doctor about it last year. He made some comment that people still on prednisone fare better transplant wise. I do have weakening of the bones as seen on DexaScans and have had that since the 1990's when my lupus was active and I was on high doses of prednisone.
FYI I should get my second antibody test for this study on the 25th before my second shot and will have the results in a day or so.
iolaire, I've had the same conversation with my own tx neph about pred, and she said the same thing. I have not had problems with prednisone, so I'm fine with it. I am very aware of the possibility of weakening of the bones due to long term pred use, not to mention my age and gender, and I get a DexaScan every other year. After almost 9 years, my bones are still ok.
I am extraordinarily curious to hear your antibody test results. I'll put that date in my diary.
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I'm at 5 mg and talked to my doctor about it last year. He made some comment that people still on prednisone fare better transplant wise. I do have weakening of the bones as seen on DexaScans and have had that since the 1990's when my lupus was active and I was on high doses of prednisone.
FYI I should get my second antibody test for this study on the 25th before my second shot and will have the results in a day or so.
In regard to the antibody test, likewise, I am interested to learn the results after the second shot. It is almost like a fingers crossed moment. Definitely will add to the puzzle or help the general community make more sense on the matter.
Now, about the prednisone.. not that I want to turn this into a prednisone thing rather than mycophenolate-focused .. the doctor info that you and MooseMom have shared is what I've learned from reading studies as well. Graft survival seems better on prednisone. Naturally, I had an existential crisis when I read this and questioned my doctor's decisions (not directly, as he is not the sort one questions, very highly regarded though). My local neph shared with me that only the SPK recipients (with the same doctor) are prednisone free versus the ones he "sent on their way" with a single kidney transplant. They take prednisone. Anyway, local doc said it is because of the side effect of steroid-induced diabetes. I hope that's right.
It's still a KDK feel today! Still feeling disheartened about the vaccine, and then I had to encounter anti-vaxxers/corona-denier comments on a hospital social media page. Just ugh. :cheer: Not even in the mood to laugh at low quality diamonds on television shopping...
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UT, it makes a lot of sense that SPK recipients might be on a different anti-rejection drug regimen than renal tx patients. I am no cheerleader for prednisone, nor am I an "anti-predder". It just is what it is.
Developing diabetes while taking the anti-rejection cocktail is certainly a concern. I have a glucose test run each time I have my regular labs done, and so far, so good. Each of the drugs I take can cause T2D in the long run, it seems. Ugh. KDK.
Since this disappointing news from JAMA, I am REALLY not in the mood to even listen to anti-vaxxers or covid deniers. They don't know how lucky they are.
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Here's a summary of the Johns Hopkins results laid out in normal human language.
https://apnews.com/article/organ-transplants-coronavirus-pandemic-e6a3ad119cabf5cd8561ef23f1105448
KDK!!
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I am just a peripheral member of the Krappy Kidney Klub, but I very much appreciate the dissemination of this information.
I don't know if it adds anything, but I've learned that antimetabolites interfere with RNA synthesis, which is exactly how the Moderna and Pfizer vaccines work, as implied in the name ModeRNA. Maybe the J&J vaccine would be worth pursuing, if anyone has that luxury.
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I am just a peripheral member of the Krappy Kidney Klub, but I very much appreciate the dissemination of this information.
Oh, anyone can join. We've not snobs.
Have any of you had the two dose Shingrix vaccine to protect against shingles? I had both doses, and each time I got a very sore, red arm along with that "I don't feel so great" sensation the next day. In just about all discussions about possible side effects from the covid vaccine, you hear people say that if you have more unpleasant side effects than just a sore arm, that surely must mean that your immune system is working as it should. I don't know if that true or just waffle, but that sentiment is out there.
So, this is making me wonder if the side effects I felt from the Shingrix shots (but not from the Moderna covid shot) means that my immune system mounted the desired antibody response. But I don't know because I was never tested for antibodies. It was just assumed, I suppose. Do any of you have any information about this? Did any of you who took the two Shingrix shots ever have an antibody test afterwards?
I mention this because it made me wonder if we are indeed protected against shingles by the shingrix shot which uses "inactivated virus", then could a covid vaccine using "inactivated virus" be made for us? I realize it would take much more time, but it seems logical, assuming that the Shingrix vaccine conveyed any protection at all (and I'm betting no one thought to find out).
What do you all think?
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From what I've read, only 50 percent of vaccine recipients experience any side-effects. I imagine that the same percentage applies to the shingles shot. I had only one dose of the two-dose shingles regimen (never could get the second), but, again, I had no side-effects.
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Hey again MM,
As you might recall, I had the shingles vaccine as an under 65 years old person. My arm was unbelievably sore but I just chalked it up to the intramuscular injection of the shot. I didn't have any real reaction to it like tiredness or feeling blah. Like you, I did not have any further blood work after that either. It seems like the efficacy (shall we use immunogenicity to be en vogue?) of Shingrix in transplant patients is still up for debate. There is an ongoing clinical study being run by Emory: https://clinicaltrials.gov/ct2/show/NCT03993717
Do we have to wait until 2023 for more answers now? Sigh..
Guys, I just want to say thanks for being here, for real. I'm not really sure where I'd be able to talk this out with people that "get it". After the tone deaf encounters of today, I am just ........ no words.
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Ah, yes, now that you've reminded me, I DO remember you getting the shingles vaccine. I'm glad I asked the question so that you could direct me to the details of the Emory study, so thanks so much for that. I can't believe we'll have to wait that long for results. That doesn't make sense; I mean, we already at least have some indication of the IMMUNOGENICITY of the Moderna and Pfizer vaccines (well, at least after dose 1, but that's something). Surely it doesn't take 3 years to mount an antibody response. I can maybe understand them waiting so long to see for how long protection might last, but 3 years? Did no one think to research this earlier because I know I got my Shingrix shots before Emory's study began.
enginist, so you have any idea if even the one shot of Shingrix provided you with any protection?
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MM, there were enough people like me who didn't get the second Shingrix shot for the company that makes the vaccine to draw some tentative conclusions. According to their analysis, the vaccine efficacy after one dose is about 70%, compared to more than 90% for those who got the second dose. Major limitations of the one-shot analysis were a small sample size and a shorter follow-up time, which may make these conclusions unreliable. Also, there was no indication of how long the "immunogenicity" would last.
Just for my own peace of mind, I am tempted to get a blood test to see if my immune system has had a robust response to the Pfizer vaccines.
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I can't believe we'll have to wait that long for results. That doesn't make sense; I mean, we already at least have some indication of the IMMUNOGENICITY of the Moderna and Pfizer vaccines (well, at least after dose 1, but that's something). Surely it doesn't take 3 years to mount an antibody response. I can maybe understand them waiting so long to see for how long protection might last, but 3 years? Did no one think to research this earlier because I know I got my Shingrix shots before Emory's study began.
All good questions!
I wonder if the study is struggling to get participants that fit into the parameters. Probably not, but that clinical study page was updated on February 4 (2021) and it still says it is recruiting participants. Could it be running behind schedule? Just 3 years is kinda a whaaa? moment.
There was a lot of impetus and funding allocated for Covid vaccines and study, so that obviously helped the speed of reports. I wonder if at the current time Shringrix isn't so sexy right now. Still, like you said, this is a topic I would have thought would have been addressed earlier.
When I had my first meeting with my second ID doctor (now onto my third! :lol; everyone keeps moving for better jobs :P) they ran blood work to get a benchmark and see what was up. It was then I learned I had to redo my Hep B vaccines (it happens in renal patients) so I wonder why they haven't looked for immunogenicity :-* with Shringrix.
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I can't believe we'll have to wait that long for results. That doesn't make sense; I mean, we already at least have some indication of the IMMUNOGENICITY of the Moderna and Pfizer vaccines (well, at least after dose 1, but that's something). Surely it doesn't take 3 years to mount an antibody response. I can maybe understand them waiting so long to see for how long protection might last, but 3 years? Did no one think to research this earlier because I know I got my Shingrix shots before Emory's study began.
When I had my first meeting with my second ID doctor (now onto my third! :lol; everyone keeps moving for better jobs :P) they ran blood work to get a benchmark and see what was up. It was then I learned I had to redo my Hep B vaccines (it happens in renal patients) so I wonder why they haven't looked for immunogenicity :-* with Shringrix.
Hello MooseMom and Ukrainian Tracksuit,
Many thanks for answering my questions, that was really kind of you and I am wondering about your Hep B vaccines (for renal patients?) and "Shingrix" ?
I was not offered any of these vaccinations and wonder whether I should ask the medics about it? Of course, I had my first Covid-vaccination (still waiting for the 2nd one), but there was never anything else offered in terms of vaccination... Did I miss anything there?
Best wishes from Kristina. :grouphug;
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Many thanks for answering my questions, that was really kind of you and I am wondering about your Hep B vaccines (for renal patients?) and "Shingrix" ?
I was not offered any of these vaccinations and wonder whether I should ask the medics about it?
I was first told by a Dublin Dialysis center that I needed another Hep B vaccination, my local dialysis center gave me another shot when I told them. If I'm recalling right I had to get new shots twice well on dialysis.
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Many thanks iolaire, I shall ask the medics about it a.s.a.p.
Thanks again from Kristina. :grouphug;
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kristina, I, too, need to find out if I need a hep vaccine. I would have thought that between my GP and my tx clinic, if I needed one, they would have told me, but I am not positive about that.
As for Shingrix, no doctor mentioned it, but my pre-tx blood work confirmed I'd had the chickenpox virus still in my system since I had the disease when I was young. I knew it could be reactivated as I got older simply because I remembered my dad having had it, so it was on my radar. Plus, as I've mentioned before, a colleague of my husband had shingles IN HIS EYES! So, I asked about the vaccine and was told that if I took it (there was no Shingrix back then), I'd have to become inactive on the tx list for three months since it was made with bits of live virus. I declined.
I heard about Shingrix through TV and magazine ads, if I remember correctly. I contacted my tx clinic, and they said I should get it. So, I did, and I just assumed that the jab did what it was supposed to do. But after this news about the relative inefficacy of covid vaccines (well, after the first dose), I'm now wondering if it did any good. That said, though, remember that the Shingrix vaccine is made with inactivated virus and not via the mRNA process.
But yes, definitely have a word to your clinic about hep and Shingrix jabs.
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How I found out about Hep B:
The very first blood work to initiate the transplant process/testing looked at antibodies. It got a call this blood work revealed that I needed a bunch of basic vaccinations, like MMR and Hep B. So, I completed the process of vaccines right away, and went for my follow up blood work, that showed the Hep B initiated the antibody process. I thought I was protected.
Flash forward to meeting with the tx infectious disease team (post-transplant!) and they revealed I needed a new round - a high dose round. I had been in the dark all that time thinking it had worked out. Had blood work, and it looked good.
In the beginning, it was simply a requirement to have vaccines up to date to move forward in the transplant process.
Shingrix:
My tx ID team told me to take every vaccine that was suitable and available to me. :P But, I'm a little bit of an outer space mutant, as I had no antibodies to like anything. It was I who asked the team about it and they agreed. They never approached me or offered it. The same has been for a relative. They had to raise it with the doctor to initiate the conversation around it.
I am glad that I did mine although I am far under the targeted age group (senior citizens). A tx recipient (liver) in her early 40s had a mild case of shingles. She wasn't vaccinated and it randomly showed up. What a shock, eh?
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Hi. Just curious- u were able to get Hep B vaccine w a transplant?
I know as a teenager my work wanted me to get Hep B vax bc I was a lifeguard, but my neph said i couldn’t get it bc it was a live vaccine. (I also couldn’t get the yellow fever vax before my Africa trip bc it is a live vaccine, tho I did
Iget typhus and Hep A then).
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Hi. Just curious- u were able to get Hep B vaccine w a transplant?
I know as a teenager my work wanted me to get Hep B vax bc I was a lifeguard, but my neph said i couldn’t get it bc it was a live vaccine. (I also couldn’t get the yellow fever vax before my Africa trip bc it is a live vaccine, tho I did
Iget typhus and Hep A then).
Hi Naynay, how nice of you to check in. I hope that you are doing okay! (Better than okay actually!)
Yes, I was able to get the Hep B vaccine with a transplant. There are dead (non-live) vaccines that can be used. I should go look at the receipts of what I paid for to get the brand name!
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Many thanks again MooseMom and UkrainianTracksuit and also thanks to Naynay for asking. I can understand much clearer now and shall definitely ask the transplant-team a.s.a.p. about these vaccinations, especially since I am not too sure that my body could deal with any of it and it is so important to remember at all times that our immune-system is very much compromised after the transplant plus our taking all the medication to keep the transplant "working" for as long as is possible etc.
Thank you so much again for the information, it is very helpful & best wishes from Kristina. :grouphug;
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My neph who is also the transplant neph told me a year or so after the transplant he wanted me to get the Shingrix vaccine. I had to pay out of pocket because I'm too young so I was waiting a bit. I was about ready to do it last year because new secondary insurance had a health savings account part that should have paid for it. But then Covid hit so it fell to the wayside. I forgot to mention it in my last in person appointment.
To make it more complex he was not willing to write an order for it, he wants it done at his site so it needs to be preordered before my visit, he has explained that the risks are too high for me to risk a pharmacy giving me the wrong live shot.
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To make it more complex he was not willing to write an order for it, he wants it done at his site so it needs to be preordered before my visit, he has explained that the risks are too high for me to risk a pharmacy giving me the wrong live shot.
I can understand that. I had mine at my doc's office.
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I did not sleep at all last night; I'm exhausted and am not really thinking straight, so I may be looking down rabbit holes and chasing any inhabitants I may have found. I got to wondering if maybe the J&J vaccine, which is a viral vector vaccine, might be better for us myco people. I didn't find any information on this specifically, but I did come across something kind of interesting. The Chinese vaccine made by Sinovac Biotech is an inactivated vaccine, and inactivated vaccines work better in immunostupid people. Hmmmmm.......
https://theconversation.com/from-adenoviruses-to-rna-the-pros-and-cons-of-different-covid-vaccine-technologies-145454
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I didn't sleep either. Must be a part of KDK initiation.
Anyway, thank you for asking the good questions MM, even in a sleep deprived state!
Your comment got me thinking as well. I guess we simply have to wait for the data to come out, but some have already been vaccinated and for others, appointments are imminent.
That said, I read this NPR story from earlier in the month. It seems like a world away with the JAMA study released just days ago. But still, a respected doctor that served as an "investigator in clinical trials for both the Moderna and Johnson & Johnson vaccines" said: "it is recommended that people who are immunocompromised can get this vaccine." Since she used the words "this vaccine" in an article dedicated to J&J, perhaps this is props to it? Sorry, my dumb ESL brain IS malfunctioning.
Then, she said this: There's a chance the physician may adjust the patient's usual medication or treatment schedule ahead of the shot in order to boost the vaccine's effectiveness. Here is the story to read: https://www.npr.org/sections/health-shots/2021/03/04/973436193/got-questions-about-johnson-johnsons-covid-19-vaccine-we-have-answers
I never thought of that. But since mycophenolate is a daily scheduled med, how could this be done in particular around a vaccination date? Is that the key going forward? This should be a study! (says the random quack on the internet without a medical degree). It just seems like it requires a lot of communication and hand-holding rather than receiving a vaccine that we know could? is? will be? effective.
I guess I will include this in my talk with the tx team. Due to supply issues, I doubt we'd get the J&J vaccine here.
ETA: I just heard from a European contact that has been fully vaccinated (2 shots) with Pfizer. Had antibodies checked. Looks like after the second dose that there wasn't an antibody spike (at least in his case). Now that might be just him, but ugh. Need to think positive for the next installment of the study....
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Who wants to sleep at a KDK party!!
I certainly intend to get my second shot; why not? Maybe I'll be a special someone who will get lucky with antibodies.
As soon as I heard about the villainous role that mycophenolic acid plays in this, I immediately wondered if any bright sparks have started thinking about how to go about "adjustments" that wouldn't tip their patients into rejection. So yeah, I had the very same questions you have.
I am really looking forward to what your tx team has to say and what recommendations are made. That's going to be fascinating. I just don't see how there will be enough time. I'm wondering if a standard protocol for myco-patients will eventually be established, resulting in "adjustments" followed by another round of covid shot(s).
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I didn't sleep either. Must be a part of KDK initiation.
ETA: I just heard from a European contact that has been fully vaccinated (2 shots) with Pfizer. Had antibodies checked. Looks like after the second dose that there wasn't an antibody spike (at least in his case). Now that might be just him, but ugh. Need to think positive for the next installment of the study....
Hello again UkrainianTracksuit and MooseMom and I very much hope that you both had a better night's sleep?
... And many thanks to UT for including your EU-contact's experiences after their second Pfizer-Vaccine! That's the news I was hoping for to "get" some encouragement etc.!!! I have already heard from a few people here who already had their second "Pfizer-shot" and they do very well, apart from feeling a little bit tired and exhausted. But since spring-time is approaching, their symptoms could also be a combination of "Pfizer-second-shot-tiredness" plus a little bit of early spring-tiredness?
Many thanks again for your kind information and best wishes from Kristina. :grouphug;
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... And many thanks to UT for including your EU-contact's experiences after their second Pfizer-Vaccine! That's the news I was hoping for to "get" some encouragement etc.!!! I have already heard from a few people here who already had their second "Pfizer-shot" and they do very well, apart from feeling a little bit tired and exhausted. But since spring-time is approaching, their symptoms could also be a combination of "Pfizer-second-shot-tiredness" plus a little bit of early spring-tiredness?
Many thanks again for your kind information and best wishes from Kristina. :grouphug;
Hi kristina, I think there was a little misunderstanding. It's probably my fault as I should have phrased it better.
The gentleman did not have an antibody spike which means that the second dose of Pfizer was not effective. We want an antibody response to ensure protection from the virus. I cautioned that by saying "maybe that was just him" and his case, and hopefully the forthcoming studies show a better result from the second round of vaccination. That's the hopeful part, but definitely not his sharing of antibody news. That is the bad part.
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Many thanks again UkrainianTracksuit for your kind explanation, which gives me a chance to just about "getting the hang of it".
But somehow, this whole Corona-Virus-Situation is very confusing and extremely difficult to understand, especially when listening to the news as well.
Our streets are also very empty, hardly any cars to be seen, everything is very quiet in a spooky sort of way ...
How are "things" your end? Best wishes and kind thoughts from Kristina. :grouphug;
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Hi kristina,
Yes, for sure, the entire corona thing is difficult to understand and many answers, let alone "silver bullet" therapeutics remain elusive. In the beginning, I listened to the news/watched it a lot because I wanted to get an understanding of the topic. Infectious disease doctors were brought in to commentate on occurrences and answer viewer/listener questions.
But you know what? I stopped after awhile paying that much attention to it. Why? Their answers and observations are meant for the most affected communities (seniors, those with pre- existing conditions that can be widely understood, and regular people.) Transplant patients, those on chemo, and others with immuno-suppressive medications are a niche subject so it would not do me well to take knowledge directed at the masses to reflect my set of circumstances. It was better for me to focus on sources (such as medical reports, journals) that identified the unique issues related to transplantation.
You can see the current situation right on this thread. The general populace will experience a very high rate of protection against corona in general. That has been the mainstream message as well across all news media. But in our unique transplant case, it is a whole different story. Our efficacy rates are much lower and we cannot be so cheery about vaccines. So, overall, I tend to stick to the above sources I mentioned, because otherwise, I'd have more confusion.
Over here, in the province of Ontario (not Canada in general), we are in being warned our third wave of covid is here, or forthcoming. Our "variants of concern" are spreading. Locally, our numbers are going up, though we have no variants yet. We are currently not in a lockdown so our stores are open and people are going about their business as usual, just with a mask and social distancing being enforced. So, it's not too bad, right now.
On the other hand, my husband is on the fence about being vaccinated. He's not an anti-vaxxer, but he feels uncomfortable about the entire thing.
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This older story implies that the lack of antibodies might not mean lack of protection - I'm not saying its true, but I would like to know more about that in light of our bad news.
https://www.washingtonpost.com/lifestyle/2021/02/12/covid-vaccine-antibody-test/
How about an antibody test to determine if the vaccine was effective?
The CDC discourages antibody testing for assessing immunity after getting the vaccine. In clinical trials, the Pfizer-BioNTech and Moderna vaccines were shown to protect people against the virus 95 percent of the time and 94 percent of the time, respectively. But that does not mean everyone who gets the vaccine would test positive for antibodies, Murphy said.
Commercial antibody tests may not be searching for the same antibodies that the vaccine triggers. Someone who has had the vaccine and is immune to the virus may still test negative for certain antibodies, Murphy explained.
Mutated virus may reinfect people already stricken once with covid-19, sparking debate and concerns
In any case, Murphy added, antibodies are only part of a person’s immune system response. Some studies have shown that protective T cells, a white blood cell that helps protect against disease, have been elevated in some patients with covid, even though the patients had no detectable antibodies.
“After the vaccines, a lot people are going to get antibody testing — ‘Oh, I want to see if it’s working.’ It actually has very little correlation,” he said. “Many people will test negative on the antibody test, and that does not mean the vaccine didn’t work.”
Also this makes it look less grim if its true:
https://news.yahoo.com/vaccine-response-may-weaker-elderly-201942978.html
The COVID-19 vaccine from Pfizer Inc and German partner BioNTech SE induces weaker immune responses in elderly people compared to younger and middle-aged adults, new data suggest. Researchers studied 91 vaccine recipients under the age of 60 and 85 recipients over age 80. Seventeen days after the second of two doses, nearly one-third (31%) of the elderly recipients did not have any antibodies capable of neutralizing the virus. This was true for only 2% of the younger group, the researchers reported on Friday on medRxiv ahead of peer review. Even among those under age 60, only 16% had neutralizing antibodies after the first dose, the researchers found. "But that doesn't mean that the elderly should expect severe complications if they get infected," said coauthor Ortwin Adams of University Hospital Dusseldorf in Germany. "Recent reports from Israel, England and Scotland show that rates of hospitalization and severe disease progression are significantly lower than in the unvaccinated, even in people over 80 and even after the first COVID-19 vaccination," Adams said. "However, it could mean that the elderly need to be revaccinated sooner than young people to generate long-lasting protection. The results also suggest that transmissions may still be possible in some of the elderly after vaccination," he said, adding that "measures to effectively prevent transmissions should be continued."
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Dear UkrainianTracksuit,
I very much appreciate your time and effort to explain more about “it”.
It is very much appreciated because I was beginning to fear that one first needs a PHD in science before being able to understand, but now I am confident to slowly "get there". :thx;
I also made the same mistake and listened to all Radio-news & checking-up on Internet-news and, of course, it was getting more and more confusing, especially since most scientists disagree with each other as well. Where does that leave us, when they can’t even agree with each other?
Nevertheless, I thought it might be a good idea for me to continue being extremely careful when going out by wearing my face-mask and my gloves etc. and just continue to be very vigilant, wait for my turn next month to receive my second Pfizer-vaccination and continue to hope for the best. What else can I do? I am sure that scientists work out a special formula for us transplant-vulnerables ...
Please take great care and many thanks again from Kristina.
P.S. I do hope your husband is no longer "on the fence" and feels a bit more comfortable about the vaccination, fingers crossed! :grouphug;
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This older story implies that the lack of antibodies might not mean lack of protection - I'm not saying its true, but I would like to know more about that in light of our bad news.
https://www.washingtonpost.com/lifestyle/2021/02/12/covid-vaccine-antibody-test/
How about an antibody test to determine if the vaccine was effective?
The CDC discourages antibody testing for assessing immunity after getting the vaccine. In clinical trials, the Pfizer-BioNTech and Moderna vaccines were shown to protect people against the virus 95 percent of the time and 94 percent of the time, respectively. But that does not mean everyone who gets the vaccine would test positive for antibodies, Murphy said.
Commercial antibody tests may not be searching for the same antibodies that the vaccine triggers. Someone who has had the vaccine and is immune to the virus may still test negative for certain antibodies, Murphy explained.
Mutated virus may reinfect people already stricken once with covid-19, sparking debate and concerns
In any case, Murphy added, antibodies are only part of a person’s immune system response. Some studies have shown that protective T cells, a white blood cell that helps protect against disease, have been elevated in some patients with covid, even though the patients had no detectable antibodies.
“After the vaccines, a lot people are going to get antibody testing — ‘Oh, I want to see if it’s working.’ It actually has very little correlation,” he said. “Many people will test negative on the antibody test, and that does not mean the vaccine didn’t work.”
Also this makes it look less grim if its true:
https://news.yahoo.com/vaccine-response-may-weaker-elderly-201942978.html
The COVID-19 vaccine from Pfizer Inc and German partner BioNTech SE induces weaker immune responses in elderly people compared to younger and middle-aged adults, new data suggest. Researchers studied 91 vaccine recipients under the age of 60 and 85 recipients over age 80. Seventeen days after the second of two doses, nearly one-third (31%) of the elderly recipients did not have any antibodies capable of neutralizing the virus. This was true for only 2% of the younger group, the researchers reported on Friday on medRxiv ahead of peer review. Even among those under age 60, only 16% had neutralizing antibodies after the first dose, the researchers found. "But that doesn't mean that the elderly should expect severe complications if they get infected," said coauthor Ortwin Adams of University Hospital Dusseldorf in Germany. "Recent reports from Israel, England and Scotland show that rates of hospitalization and severe disease progression are significantly lower than in the unvaccinated, even in people over 80 and even after the first COVID-19 vaccination," Adams said. "However, it could mean that the elderly need to be revaccinated sooner than young people to generate long-lasting protection. The results also suggest that transmissions may still be possible in some of the elderly after vaccination," he said, adding that "measures to effectively prevent transmissions should be continued."
Many thanks iolaire for your kind research to find this most interesting article.
Take great care and kind regards from Kristina. :grouphug;
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iolaire, thank you so much for mounting such a valiant effort to make us all feel better! :thumbup;
I am not going to pin my hopes on the information on these two articles, though. I don't think that the Johns Hopkins study relied on mere "commercial" antibody tests when the purpose was to study the response in our specific "community".
If you get vaccinated but don't test positive for antibodies, then how do you know you have any protection at all? If you are a tx patient and take mycophenolic acid as part of your anti-rejection cocktail, it seems to me that it should become standard procedure now to be tested to see if you've developed antibodies, right? I mean, sure, still wear a mask and all, but if the whole purpose of this exercise is to mitigate the risk of serious illness/ hospitalization/ death, wouldn't it make sense to want to know if you're have any protection?
I am really curious to see what is gong to happen next. We myco people are starting to get our second shots, and we are gong to quickly need some guidance. I confess to being a bit disappointed that tx clinics have not reached out to their patients about this. Yeah, I know it is still early days, and I know that all of the data is not in, but do you think that clinics are starting to discuss strategies for the future? Or, are they just going to leave us out to dry?
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. I don't think that the Johns Hopkins study relied on mere "commercial" antibody tests when the purpose was to study the response in our specific "community".
My test was done at LabCorp. I provided the test name/code early in the tread if you want to try to figure out how uncommon it is.
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Thank you Iolaire, for the additional info. I too have read similar information on the possibility that absence of antibodies may not mean no protection from the vaccine. The JAMA article refers to the need for additional testing of T-cell response. I think we can only take from this study that we should not assume we have any protection from the first shot, especially if we are on mycophenolate, and we need to continue to be careful as long as the virus continues to be widespread. To read more than that into this one limited study is a mistake, I think. Easy to say, I know, for those of us who are worriers. If I recall, the first study of lethality from COVID in transplant patients was pretty dire, but subsequent evidence showed much better results when they had larger samples to test.
MooseMom, I too felt these results as a gut punch. I am also on Mycophenolate, plus I received the Pfizer vaccine. And we are seeing a major surge here in Michigan, cases up more than 50% in three weeks, second in the nation for variant cases. It is terrifying. On Monday I had a virtual appointment with my UW transplant center. I was assigned a nurse practitioner I had never worked with before because new rules require I have someone licensed in Michigan for virtual appointments. So I didn't get to pick the brains of my usual NP. This guy was pretty evasive when I asked about the effectiveness of the vaccine. He knew nothing about the Johns Hopkins results, but they had just come out. All he would say is that the vaccine is safe for us and it is not clear yet how effective it will be for transplant patients.
From my experience, these transplant centers are likely to be very cautious about giving guidance until there is more evidence available from further studies. I expect they might be willing to order antibody tests for us when the next studies come out about results after the second shot. It may be several months, however, before they come to a consensus on how to proceed. Perhaps they will recommend a non-mRNA vaccine or adjust the mycophenolate long enough for a second round of vaccines. Perhaps the researchers will come up with a better vaccine that will thwart the mycophenolate. I have full confidence they will figure this out, but not until they have a lot more information and experience than they have now. As MooseMom noted, among the larger vaccination effort we are far from being a priority group, but we are a priority group for our individual transplant centers. They do not want to see their transplanted patients get sick or lose their transplants. They are constantly learning and adapting, but sometimes slow to react until they have solid evidence.
I am not trying to downplay the results of this Johns Hopkins study. The results are deeply disappointing. At minimum, we are looking at months more of the isolation, even as others around us are gleefully celebrating their new freedom. It is maddening. Still, I am trying to put this all in perspective. As more people get vaccinated we will be safer, eventually cases will decline and our risk of getting infected will decline also. We are already susceptible to dozens of viruses and infections for which their are no vaccines. We know because we have been tested for things most people have never even heard of. Eventually there will be more effective treatments for COVID (I read about a pill form that will be out soon). The transplants centers will in time just add COVID to the list and learn how to prevent and/or treat transplant patients who contract it. I just hope they figure it out sooner rather than later for those of us whose lives are still boxed in by this thing.
MooseMom, you are about nine years into your transplant, aren't you? You've had a few setbacks, but have managed to stay remarkably healthy thus far. You have beaten many odds already. And we have all made it a whole year without getting this dreaded virus. I waited six years for my transplant, and dodged dialysis for 10 years in Stage 4 before I got my new kidney. So we will persevere, but I see a few more temper tantrums and fits of depression in my future before we make it past this. I think we are all entitled to that after living through this past year. And thankfully we can come here to gripe with the only other people who get what we are going through.
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Thank you for your post, tigtink. It incorporates everything I've been pondering but in a much more coherent form. My posts on this topic tend to be like 100 ping pong balls flying to and fro.
You do make a point to which I did not give fair consideration, and that's the notion that tx clinics don't want to have all of their patients suddenly fail because of covid. I'm sure they will digest all of the data when it is available and will plot a course forward. It is unfair to ask them for guidance now. I recognize that, and that is my frustration speaking.
I just need to take a deep breath, recalculate and recalibrate, and get on with it. Nothing has really changed, although it feels like it has. But no, nothing has really changed.
Again, thanks, tigtink! You take care!
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In one sense you are right: nothing has changed for us in terms of the way we love our daily lives. But things have changed drastically in our shared experience of it. People around me are getting their shots and have a sense of a timeline about when they can start doing things they could not do in the past. The sense of relief and hopefulness is palpable, even though there are still uncertainties. Up until now, we were in the same boat as everyone else, waiting and hunkering down. We as transplant patients now have no timeline and will eventually have to explain why we are still so cautious and cannot participate in the same activities. This may be beating the metaphor a bit, but they are sailing toward shore while we remain adrift. Somehow that makes it lonelier for me. I will adapt, but it piles a sense if unfairness on what was already an difficult situation. I think that is what has changed. We are suddenly in a much smaller club.
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Not entirely related, but as a member of the KDK, I have to share. I will admit that this whole vaccine news dampened my spirits. I was in such a slump. I still feel that way. (And I broke my laptop too. :P) But I just got the results of my blood work, and my egfr is 124 mL/min. Happy, but still apprehensive about the short term future.
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I think there is reason for optimism. We as individuals have learned how to avoid this virus, which doesn't seem as ominous as it did a year ago. We should be grateful to the pharmaceutical industry for doing the impossible and coming up with these vaccines in record-breaking time. And even if the current versions fail to benefit everyone, we know that the vaccines can be tweaked. Better ones will be developed, tailored to every profile, maybe in six months or less. I think that's really remarkable, almost as remarkable as an eGFR of 124.
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Not entirely related, but as a member of the KDK, I have to share. I will admit that this whole vaccine news dampened my spirits. I was in such a slump. I still feel that way. (And I broke my laptop too. :P) But I just got the results of my blood work, and my egfr is 124 mL/min. Happy, but still apprehensive about the short term future.
I am assuming that in Canadian money, this is quite spectacular! That's quite the silver lining!
My egfr isn't nearly that good, but all of my other values are in the green column, and I'm OK with that.
To everyone, :grouphug;
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In one sense you are right: nothing has changed for us in terms of the way we love our daily lives. But things have changed drastically in our shared experience of it. People around me are getting their shots and have a sense of a timeline about when they can start doing things they could not do in the past. The sense of relief and hopefulness is palpable, even though there are still uncertainties. Up until now, we were in the same boat as everyone else, waiting and hunkering down. We as transplant patients now have no timeline and will eventually have to explain why we are still so cautious and cannot participate in the same activities. This may be beating the metaphor a bit, but they are sailing toward shore while we remain adrift. Somehow that makes it lonelier for me. I will adapt, but it piles a sense if unfairness on what was already an difficult situation. I think that is what has changed. We are suddenly in a much smaller club.
I've read your post over and over. You're right. Our timelines are shrouded in mystery.
I had thought I had adapted reasonably well. I am used to, and enjoy, my own company. I have plenty to do. I don't have to frequent lively venues to feel like a whole person. I don't ask for much, and I don't need much.
The only thing I want, though, seems further away than ever. I want to be able to get on a plane and fly to London to see my son like I have done every year. I haven't seen him since October of 2019, and I don't know when it will be safe enough for me to sit around at O'Hare to get on a plane for Heathrow, two of the busiest airports on the planet, and then back again. Will I ever be able to use the trains and the Underground? London is my second home. My sense of my existence will be severed in half if I cannot return. I am not getting younger; I have that perception, now, of time running out. I refuse to reread books or re-watch shows because I don't have that luxury of time. I don't feel like I have half a decade to sit still while all of the bright sparks figure out how to sidestep mycophenolic acid.
I've never really considered myself to be "medically fragile". I pop my pills and get my labs done, and that's about it. I just get on with it. I'm sure I have some side effects from the drugs, but honestly I don't notice them. If I do, I chalk it up to merely getting older. So, this is the first time in the almost nine years I've had my tx that I've really had to stop and reassess. This is the first time I've had to consciously label and categorize myself as anything outside the norm, and I resent it.
But, I will hope for the remarkable as enginist wisely suggests.
Edited to add: I am very aware that I am only one among very many who have loved ones far away and for whom intercontinental/transoceanic is impossible at the moment. I know this is a first world problem.
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I am not getting younger; I have that perception, now, of time running out.
I know that your post was not directed at me, MM, but this was like a gut-punch. For real.
First, I cannot even imagine your internal dialogue and emotions you must be having over the inability to travel to the UK (in the worst case scenario.) Sitting here, thinking quietly, it is difficult wrap one's head around the feelings of not being able to see a son or visit a place that has being so important to one's being.
Secondly, the realization that we are not as "strong" medically as we consider ourselves is a tough one to digest. Feeling as good as can be, following medication guidelines, being a compliant patient, and always being in proactive mode (hygiene, basic things like avoiding sniffling coughing people) has served us well, but there are fish too big to fry, and we don't have the tools. That is extremely humbling. The fact that we have to wait for answers on specialized minds, versus the basics for non-immuo-compromised or those not on mycophenolic, feels almost depressing. It is not that I don't trust them to get it done, but they do not have the sense of urgency like we do.
I will say it is exhausting to live life with the feeling that time is running out. Okay, look, on the linear timeline of life, yes, I am behind on the ruler compared to some in this discussion. It is not the same I know, but that "time is running out" feeling has been in the pit of my stomach for all of my adult life. First, it is was, "I need to get as much done before dialysis. Dialysis will either stop things or make them certainly a lot harder." Then I ended up in critical care and came close to meeting my maker twice. That really sends one into a tailspin that life is not only short, but fragile. That consequently pushes the need to get more done as now time is fickle, unpredictable thing. And then corona happened...
The first time I cried during the pandemic was when our phones went off with the "state of emergency" alert at the first lockdown. It wasn't because there was a lockdown (inability to see friends, go out, see things), it was that I knew here we go, more time cut out of life. I had the same feeling all last week and during all this talk that we don't have a handle on the virus here. More time chipping away... lost time, time that I do not have. Right now, I hope to see an extremely elderly fragile relative, but I am also mentally preparing myself that it won't happen. I've given up hope on so many things with time being a significant aspect of it.
I'm at a level of morose Heidegger-level existentialist crisis right now. Not because of the lack of social outings, but because of the loss of time, to what? To existing, but not being. There's a lot of unpack from this one statement, but I won't do that. :P
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I'm not attempting to negate your concerns/feelings. But I do my best to suppress stressors. So I'll provide more on the lab tests for the study.
Here are details on the lab test. The Labcorp details are:
164090 SARS-CoV-2 Semi-Quantitative Total Antibody
It an other antibody tests offered by Labcorp are here: https://files.labcorp.com/labcorp-d8/2020-12/L23586-1220-2_nex.pdf
Its the first test in this list:
LabCorp now offers multiple options for SARS-CoV-2 antibody testing:
- SARS-CoV-2 Semi-Quantitative Total Antibody [164090]:
This semi-quantitative assay can help assess the level of antibodies in people who have
been infected with the SARS-CoV-2 virus. The test looks for antibodies against the receptor
binding domain (RBD) of the spike protein, which is the target of many candidate vaccines. - SARS-CoV-2 Antibodies [164068]:
This qualitative assay uses a modification of standard ELISA methodology to detect the
presence of high affinity antibodies to the SARS-CoV-2 nucleocapsid protein.1
While the assay does not differentiate between antibody types, it preferentially detects IgG
antibodies since these are most likely to evolve to become high affinity.1 - SARS-CoV-2 Antibody, IgG [164055]:
This qualitative assay uses a modification of standard ELISA methodology to detect the
presence of IgG antibodies to the SARS-CoV-2 spike protein
My pre vaccination baseline results were:
TESTS SARS-CoV-2 Semi-Quant Total Ab A
RESULT <0.40
UNITS U/mL
REFERENCE INTERVAL <0.80
Interpretation:
Negative <0.80
Positive >0.79
John Hopkins provided the results as:
Thank you for participating in our research study: COVID-19 Antibody Testing of Recipients of Solid Organ
Transplants (IRB00248540).
As you may recall, you sent us a blood sample to be tested for antibodies to the virus that causes COVID-19.
Antibodies are proteins that help fight off infections and sometimes provide protection against getting that
disease again. We tested your blood to look for antibodies to see if a COVID-19 vaccine has generated a
response within your body or obtained a baseline sample to see if you already have antibodies.
Your antibody test result was: negative.
A negative test means that your body has not generated antibodies or does not currently contain antibodies.
The testing is not 100% perfect and may be falsely negative even if you have had the infection. We do not
know yet if all people who have had a COVID-19 vaccine develop antibodies. Scientists are working to
understand this, and your participation in this research study may help us answer this question.
We encourage you to continue to take steps follow your doctor's advice to protect yourself and others.
Of note looking up that study code brings up two studies, so it looks like the home dialysis folks can participate in the second study.
https://transplantvaccine.org/ COVID-19 Vaccine in Transplant Recipients
https://vaccineresponse.org/ COVID-19 Vaccination in Patients with Chronic Conditions
COVID-19 Vaccination in Patients with Chronic Conditions
What are the eligibility criteria?
18+ years old, English-speaking, living in the US, received a COVID-19 vaccine or intention to receive a COVID-19 vaccine, and a chronic medical condition including: cirrhosis, end-stage renal disease using home dialysis, HIV, inflammatory bowel disease (Crohn’s disease or ulcerative colitis), or an autoimmune/immune-mediated condition.
Next Thursday I will get my pre second shot lab work so by the 30th I should know if there was any change in antibodies. Also I have an antibody test on file that my work posted last June, maybe I get that filled in May or June to see how that differs in testing type from this study.
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Wow. You guys have really hit on the core of what many of us are feeling now. The realization that despite our good health and all we do to stay that way we really are medically fragile is very humbling. That sense of urgency and feeling that time is running out is so intense for me. During those months when the YMCA was closed and I could not go to the pool, my arthritis acted up and I began to feel old for the first time in my life. The powers that be do not have the same sense of urgency about our fate. We are told to wait as we are more and more aware we have less and less time left for all this waiting. Most of you, like me, are used to taking charge of your health, but now it feels as though it is in the hands of others who do not understand or care about our running out of time.
Yes, we have reason to be hopeful, but those feelings remain. MooseMom, since I don't have children, I can't even imagine your frustration at not knowing when or if you will be able to make that all important trip again. It is all so unfair, given how much you have already been through and how hard you have worked to stay healthy. As UK so beautifully described it is exhausting.
I have no great words of wisdom or encouragement here, It is just comforting to know I am not alone in these feelings.
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And today this story:
https://news.yahoo.com/effective-first-shot-pfizer-moderna-112936910.html
How effective is the first shot of the Pfizer or Moderna vaccine?
William Petri, Professor of Medicine, University of Virginia
Bottom line
So what do we know? The Centers for Disease Control and Prevention urges people to get both doses of the Pfizer and Moderna vaccines. You should be reassured that even after a single dose of either of those vaccines, you have very high levels of protection after your body has time to build immunity, about a week. The scheduled second dose of these vaccines makes them even more effective, but at a time where vaccine supplies are limited, there’s a lot to be said about prioritizing the first dose for the most people.
A few of you brought this up in other forms, but there clearly is an effort to not criticize the vaccines effectiveness because we all need everyone to be vaccinated. The story plays into that, for the good of the country and even us its probably best to let anyone who wants a vaccine get the first shot. I'm sure decisions are being made at the CDC level to say grandparents can visit their grandchildren even as some scientists worry about the elderly not being as protected. Lets hope its based on science saying that less protected people will not get as sick.
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Here will be another dump of links and summaries as I try to find non Johns Hopkins results for reference:
https://www.pennmedicine.org/updates/blogs/transplant-update/2021/march/evaluating-the-effects-of-the-covid-vaccine-on-transplant-patients
Penn Transplant Institute study looks similar to Hopkin's study, local blood draws so I guess 2 PCAM Transplant Clinic lab patients only.
https://www.cst-transplant.ca/_Library/Coronavirus/National_Transplant_Consensus_Guidance_on_COVID_vaccine-20210123_FINAL-DK.pdf
PDF - March 6 Canadian National Transplant Consensus Guidance on COVID-19 Vaccine - no details on effectiveness
A Canadian center's letter to patients: https://www.uhn.ca/Transplant/Documents/transplant-patient-vaccine-letter.pdf
https://www.imperial.ac.uk/news/216393/covid-19-vaccine-response-patients-with-impaired/
UK study we will look forward to information from this one - COVID-19 vaccine response in patients with impaired immune systems
Current evidence shows that people with these medical conditions may not obtain optimal protection from established vaccines. Patients with significant underlying diseases were generally excluded from COVID-19 vaccine studies to date – it is now important to confirm that the COVID-19 vaccines work well in such conditions.
Thousands of patients studied across the UK
The OCTAVE study will investigate the effectiveness of COVID-19 vaccines being used in the UK in 2021, in up to 5,000 people within these patient populations.
Using a variety of state-of-the-art immune tests performed on blood samples taken before and/or after COVID-19 vaccination, researchers will determine patients’ COVID-19 immune response and therefore the likelihood that vaccines will fully protect these groups from SARS-CoV-2 infection.
News on the above https://www.wionews.com/world/new-study-examining-effect-of-covid-vaccine-on-impaired-immune-system-to-start-soon-367581
https://www.mskcc.org/coronavirus/vaccine-safety-side-effects-for-people-cancer
Nothing new here but focuses on Cancer weekend immune systems, talks about maybe scheduling around treatments: Why Cancer Patients Should Be Vaccinated against COVID-19 and What Is Safe Afterwards
https://jasn.asnjournals.org/content/early/2021/02/25/ASN.2020121766
COVID-19 and Dialysis Patients: Unsolved Problems in Early 2021
Sort of a summary of the things the specialists are thinking about.
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iolaire, I am certain that you are not negating our concerns/feelings, some of which I suppose you feel, too, and I thank you for spending so much time and effort to supply us with more links (and summaries!). I'm sure we all try to avoid stressors; I've been trying to do just that for the past year, with have been pretty successful, until just a few days ago. But I will adapt just as we all have to adapt. I feel a bit better each day, and I have not had another sleepless night. The information you've provided really helps. Thank you.
My apologies, but I am not sure I fully understand your timeline. If I understand correctly, you had a pre-vaccine antibody test, the result of which showed that your covid antibody status was negative.
Then you had the first shot, and then you had another antibody test, and this one also showed that your antibody status was negative.
Next Thursday, you are due to have a pre-second shot covid antibody test to see if you've developed any, and you are to have the results by the 30th.
Is all of that correct? If so, when do you actually get your second shot, and when will you have blood tests to see if you've developed antibodies post 2nd dose?
The AP article summarizing the findings of the JH study has been copied around the world, so it is very difficult to find any new information. Perhaps there is no new information, and there won't be new information until the study starts looking at people after the second dose.
I fully understand that there surely must be a hesitancy to speak negatively about the vaccine in any way, even if the negative message is only to myco tx patients. We don't want to add to anything that might give people pause in getting the shots. The more people who are vaccinated, the safer we mycos will be.
I am heartened to see so many studies that are now concentrating on immunosuppressed patients. It will be interesting to see if their results differ from those from JH and if they also reach the conclusion that it seems to be mycophenolic acid that is the spanner in the works.
tigtink and UT, thank you for listening and understanding. It is a beautiful day today, although a bit chilly, but the winds have died down, and it's a good day to be outside. So today, I'm going to enjoy the fresh air and the early signs of spring. The world will not fall apart if I spend this one day thinking of other things. Today I will wrestle back control of my life. Today I will show myself some mercy, and I hope the rest of you will do the same.
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My apologies, but I am not sure I fully understand your timeline. If I understand correctly, you had a pre-vaccine antibody test, the result of which showed that your covid antibody status was negative.
Then you had the first shot, and then you had another antibody test, and this one also showed that your antibody status was negative.
Next Thursday, you are due to have a pre-second shot covid antibody test to see if you've developed any, and you are to have the results by the 30th.
Is all of that correct? If so, when do you actually get your second shot, and when will you have blood tests to see if you've developed antibodies post 2nd dose?
Not exactly. I've had one pre-vaccination antibody test ordered by the John Hopkin's study at LabCorp. I've provided the results sent by both John Hopkin's and LabCorp - with LabCorp being the raw values and what is sent to John Hopkin's, the second result is John Hopkin's summary of the same results. I'm providing both results just to show different interpretations.
I will get my final shot on the Friday the 26th, they want the lab work down within the 7 days of the shot, but as close as possible to the actual shot date, so I'll get the labs drawn on Thursday the 25th - the day before. If LabCorp is as fast as last time I'll have my results at 10 am on the 26th and then the same results in the John Hopkin's format on the 27th at 4 PM.
I don't know when the following antibody tests will take place. So far I received one set of orders to be used twice, once before each shot. Likely they provided some details on the timeline but I didn't pay attention to it, so I looked back and this is what they said:
After your second COVID-19 shot:
We will be contacting you and sending you additional blood collection devices for blood samples at various time points during the year.
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Thank you for clearing that up for me, iolaire.
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Hello again,
... At the end of January I had my first Pfizer vaccination and here is my update :
Straight after my first Pfizer-vaccination everything seemed perfectly alright, I had no big side-effects, felt a little bit tired and exhausted, but there was nothing more serious to report.
But recently I felt some dizzy-spells coming on ... and then off again ... and I don't want to set-off any red flags or alarm-bells, but I have noticed that these dizzy-spells have increased and today I found out (courtesy of the Internet), that these dizzy-spells (there is no pattern, they just come on) seem to be a side-effect of my vaccination. Since this is the side-effect of my very first vaccination, I wonder what to do about the second vaccination and have to ask my doctor about it.
Strange, isn't it? There we need the vaccination most urgently in order to survive this pandemic without getting infected ... and we also know for sure that with our compromised immune-system there is hardly a chance to survive, if we would get infected ... but the side-effects of the vaccination with sudden dizzy-spells are not recommendable either ... :(
Best wishes and good luck to everyone ... Kristina. :grouphug;
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Ladies, you should hear yourselves. You sound like the Weeping Willows Club, all of you pulling out your hair in existential dread. Yes, you will die someday. So what? You've already cheated death, and even dialysis in some cases, but now you want to be immortal too? You're lucky that you haven't died of Covid, which is a slow and painful way to go. Your heartache, MM, about your son is perfectly understandable, but this other stuff--this wailing about the relentless flow of time--is kind of ridiculous. As far as I can tell, you all have rich, fulfilling lives. Instead of focusing on the clock, be productive like iolaire. Death has only as much importance as you choose to give it.
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Wow, enginist. How incredibly condescending. For your information, surviving does not mean stuffing feelings into a box and pretending all is well. We are entitled to our feelings. I have survived and thrived because I allow myself to feel what I feel, express those feelings, and move beyond them. That makes me a healthy human being, not someone who is being ridiculous or whining about someday dying. Who are you to make such judgments? No one is making you read these posts. And why address us as "Ladies"? It is sad you feel a need to come here and denigrate others. It is mean and cruel.
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Obviously most of this sentiment is directed at me since I am the one that mentioned existentialism!
:cheer:
No one said anything about being immortal. Being concerned about time and not being able to do some things does not directly tie into wanting to be immortal. To be honest, all we did was reiterate Pink Floyd's "Time" in a way understood why those on mycophenolic acid. Being very in tune with mortality, and just biological clocks, is what actually makes me conscious about time. Totally fine with death to be honest; in fact I'm listening to a whole album about death!
It is one thing to offer some basic "you will be okay" platitudes, but a completely other thing to dismiss raw feelings. So, where are we to rant on renal related stuff if not here? To be honest, this reply was like when I'm actually unnerved by something, and my husband says, "Oh, is your period coming?"
In order to have these fulfilling lives that you sense, we have to be able to pursue our passions, dreams and foster connections. Obviously that will come, but when?
If I was in the later stages of my life, perhaps I'd be nonchalant about it like you. Until renal failure came into your life, (I assume) you had all the time of the world to make your own decisions and not really have to consider about Plan J, K, L, and even zigzag to Plan Z because some malfunctioning organs dictated certain limits.
I'd like to see relatives before they die. I'd like to adopt a child, but certain jurisdictions have age limits. All of these bumps in the road do in fact conflict with the fulfilling life I hope to have. Time matters. And the more impediments due to time make some very important things elusive.
And oh, I'm always in existential crisis — it is in my genes after all. Covid is just a hyper-magnifier. Perhaps during the rest of corona, I'll get on shortwave radio and do my ramblings there with the rest of the mutants and numbers channels.
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I apologize.
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kristina, I certainly am not an expert on every single side effect that could possibly occur after having the covid jab, but I am concerned that you are suffering dizziness so long after the jab. That makes me suspect your dizziness may be caused by something else, and it might be an idea to consult with your medical team. If this dizziness had occurred one or two days after the jab, I'd assume that was the cause, but the timing you are describing sounds odd to me. How are you feeling now? Has your dizziness dissipated at all? Is your bp OK?
Enginist, I am able to whine and be productive at the same time! LOL! It's a real talent, I know! :P But on another note, I had meant but had forgotten to tell you that I agree there is still reason for optimism. Well, guarded optimism. You are absolutely right to remind us that the fact that we have vaccines at all, so soon in this pandemic, is nothing short of a miracle. I sense that as more and more people get vaccinated, it will be safer and safer for us myco people. But a lot will depend upon the behavior of other people; will they stop wearing masks or start ignoring safety precautions? And the variants...what about the vairants?
I personally am very intellectually curious to see what happens next for the mycopeeps. I confess to finding this pandemic rather fascinating, and I was always teased for liking "germ movies". Pass the popcorn when "Contagion" comes on (and I don't like popcorn)! There is a great documentary on Netflix called simply "Pandemic", and it was produced, filmed and released just a few months before covid, so that makes it especially scary and prescient. It follows various doctors and epidemiologists and other experts in four or five different parts of the world as they work to find the possible origin of the next wave and type of influenza that might become a, yes, pandemic.
I'd rather be a member of the Krap Day Klub than the Weeping Willows Club, which doesn't sound like nearly enough fun! I bet the snacks aren't very tasty, either. :cookie;
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Instead of focusing on the clock, be productive like iolaire.
Okay, I didn't see this one sentence the first time, but this is one HOLY F*** slap in the face moment. Be PRODUCTIVE? I work a high stress job that until recently saw me put in 14 hour days! I am literally overseeing an international development project ON THE SIDE as part of a volunteer initiative.
I fought to finish my education (PhD) dealing with ESRD and then dialysis. And be productive?
That's why people shouldn't assume stuff and then spout off condescending scat. It's very common to be productive and suffer dread. I'm sure the guys that worked on the R504 highway were totally productive too! And with that, I am so out of this thread.
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Please do not leave this discussion, UT. The subject matter is just too important. You have an inquisitive, calculating, rational mind that has been honed by your own dreadful medical experiences. You ask the right questions and search for the right answers, just like iolaire does, and at this point in time, we need all hands on deck.
i
Studies on the efficacy of the second does have not even begun yet, so we need to be vigilant. Fortunately for us, iolaire is a participant in the study and is in the perfect place to disseminate information as he receives it. That leaves the rest of us free to discuss it, usually in the form of asking even more questions. We each have access to different transplant clinics, so we have different sets of medical people from whom we can perhaps extract different bits of information. Then we can come back here and share what we've learned.
Our spouses/partners/families are supportive, but they don't know what mycophenolic acid is and wouldn't recognize it if they passed it on the street. We are the only people with whom we can have an informed conversation. We can't afford to leave each other behind, so I respectfully ask that you remain. Thank you.
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I second everything MooseMom said! This thread has been a great help to me in recognizing and processing some feelings I could not quite define. I've talked to friends and family, but they don't get it the way you guys do. UT, your sharing was important and helpful, so please stay. MooseMom is right: it is all hands on deck right now. Not everyone shares in the spirit of this board but we still need to keep it going. There is so much wisdom and compassion and experience that can be shared here.
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Hello MooseMom and many thanks for your kind concern. I was fortunate enough to have had some medical assistance to have “it” checked-up and it is still ongoing, but fortunately some medical questions have already been“sorted” in a positive way. There is also the point that my body often reacts totally different to treatments, vaccinations etc. and that makes it often a bit “tricky” for doctors to find a diagnosis and hopefully there might be an answer soon. Take great care and I send you my best wishes from Kristina.:grouphug;
Hello UkrainianTracksuit, I can understand your concern and I beg you to please not take “it” too personally. This is a very difficult time we go through and hopefully we all “make it through” alright and I send you and your husband my kind regards from Kristina and please take great care. :grouphug;
Hello enginist and many thanks for your kind apology and I am sorry if I might have come over a bit as "a member of the Weeping Willows Club” ... I agree with your thought, that death has only as much importance as we choose to give it. But you see, right now we all have to deal with a threatening “unknown” and that is very unsettling indeed, especially since many of us not only had to fight hard with dialysis, but we also had to face the unknown outcome of an eventual kidney-transplant.
But ... at least there are many documents we can read about dialysis and and study about kidney-transplant, which gives everyone a fair choice, but about Covid we know as much as nothing and so far there was hardly enough time for a thorough research. This situation leaves many people in a quandary, especially if they suddenly experience strange symptoms after their Covid- vaccination. So, if at the moment I might appear a bit overemotional etc. please don’t observe me too closely and hopefully, in the near future I might be back to my “own self” again, especially after my urgently needed repair-operation has been finally "sorted"... Please take great care and I send you my best wishes from Kristina. :grouphug;
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Thank you, but I just feel as though I sullied the important data and posts in this whole thread with needing to blow off steam. I didn't want it to turn into that.
That said, this has left me thinking in the last few days, and my reasoning is probably wrong because I am not a scientist. I think there will be no vaccine development, even in the future, that will address our concerns about MMF. The vaccines rely on stimulation of specific T-cell and B-cell responses (there are lots of studies to look up). MMF suppresses their production (I am not speaking about specific cells as I am not trained and would lose my mind trying to learn), more so in comparison to tacrolimus.
But, we just have to wait for studies to come out to show vaccine efficacy after the second dose. After that, transplant professionals need to focus on vaccination protocols, like medication management in the vaccine period. That should be a short-term objective. Obviously a standard would take some time to come up with and disseminate.
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kristina, I'm pleased you've already been in contact with your medical team and that they are on the case, so to speak.
UT, nothing has been sullied. If I recall correctly, I was the first one to go all pear shaped in this discussion as I vented my disappointment. I think we are all able to wind our way through this thread to sort out the facts from the emotions. We can walk through the evidence and chew through our steam blowing at the same time.
I suspect you are right, though, in that no one is going to be looking at creating new vaccines for the myco people, and that is probably just as well since there probably won't be enough time for that, especially as we are starting to see more lockdowns in Europe, really horrible stats from Brazil, and other "proof" that this is not going away very soon. I share your belief that medication management is probably the path to take on a short term basis. Faffing about with an anti-rejection protocol that has been working for me is not my idea of a good time.
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Here is a big list notes from the webinar. They implied they are seeing better results from the people 30 days post vaccination 2 but some people still have no antibodies. But those results are 6/8 weeks out. It sounds like they felt I’d you have the ability to get a third shot of same or different vaccine you might want to give that a try. There will be a recording of the voice and video.
I'm running through and adding some more details, my initial post was my note dump from my phone. I think they still want participants and might even be interested in people who are already vaccinated. For example not everyone gets blood tests, but the surveys results have made them feel the vaccines are safe for us. On patient had acute rejection but they don't know the details on that.
Here is my bug dump of notes.
Transplant vaccine safety study
1000+ on call of various transplant types
10 million plus US have immune suppression so study results will be beneficial beyond transplant community
Effectiveness measures antibodies, T Cells and Memory Cells
Not doing blood tests for everyone
Follow up testing
1/3/6/12 month post shot 2
They are doing two tests, the at home version is Euroimmun anti-sars-cov-2 elisa at home test sees if antibodies bind to the cell, this is the similar process as the LabCorp test, it sounded like they are processing the at home tests themselves and they are backed up due to the numbers
Counts of participants so far and the number of tests received 3200/573 baseline, 1611/854 dose 1, 926/300 dose 2
742 tests, side effect wise younger < 65 and female had more reactions ~10% had diarrhea or vomiting, one acute rejection
First result 17% antibodies detected, was scary 436 people, younger and moderna seemed to respond better
Just starting on post shot 2 30 days tests, results are more promising but still people without antibodies, don't know if lack of antibodies mean no protection because there is a chance the T Cells and Memory Cells are providing some sort of protection, right now only measuring antibodies
Q&A
If no after first is possible later have antibodies or protections? Yes maybe with #2 or even more months out. Also will learn more with T Cell studies.
If no antibodies is it possible that they may have protection? Yes multiple may be stimulated including memory cells may respond later, have seen that in non transplant, T cells may react differently.
Would a third dose help? 2 may have been enough, also may not be immune after two doses, antidotally around the transplant community they are starting to see transplant patients in hospitals with COVID after both doses so they know that we are at risk still. There are other vaccine examples where third doses helps. If you have access to third dose let them know. They know of no one yet that had access to third dose or changed vendors.
Should we change our treatments around vaccination? We don’t know enough to recommend that. Patients with some medications don’t respond. Also doing know washout time and don’t know risk.
How careful should transplant post vaccination? Difficult to know how protected you are and how safe it is for you. So don’t know if you can follow CDC. Maintain safety protocols.
Another webinar in 6-8 weeks with second dose results.
How does this data contrast with other vaccinations? Tests are not same. Flu has good tests. Lots of studies on flu shots and booster, second and stronger shots. Flu has similar problems with mycophenolate.
Should transparent teams be testing regularly? Don’t know if they have platforms for data and don’t know what antibodies mean.
Should I tell my transplant friends to not get vaccine? No all organizations say to get it. It might do something. Safety studies look good.
Do level thresholds from the antibody tests mean much? They only report positive and negative because importance of levels. Maybe later they will know more and the score itself will mean more.
If you are waiting for transplant should you do it before? Probably get it in advance if transplant if you can but also people waiting may be sicker and not respond to vaccination.
In general terms, if you received two and have access to third dose email us directly so we can figure out how to study it.
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I learned that I will be getting the Pfizer shot once opened up to phase 2 groups. All our Moderna supply was used up in the early days vaccinating LTC residents. Eh, it is what it is. Will speak with tx team next week...
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UT, good luck with that!!
Iolaire, thanks for that. Do I understand correctly that there will be a recording of this webinar posted at some time? I'd like to watch that.
We'll hang on for more data. Again, thank you for your post.
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Received my second dose last night and feeling good so far. No antibody results from my Thursday labs yet.
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Received my second dose last night and feeling good so far. No antibody results from my Thursday labs yet.
I'm glad you're feeling well, and thanks for taking the time to post all of this information.
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OK, so part one of tx appointments done.
This particular team still contends that Pfizer and Moderna are the best shots due to efficacy results. I pointed out that the comparison with the others is a moot point because their testing and phase processes were in different contexts/stages of the pandemic. They said yes but... it is doubtful that they would achieve over 90% efficacy (like the others) if they hover in 60-mid-70% at this point. Still, excellent rates for new vaccines, but since we’re dealing with an immune-suppressed situation, where we already know the vaccines don’t work as well, focus on the highest immunogenicity overall.
They believe that since I’m “very young” (not true) and take a low dose of Myfortic, there is a very good chance that I will have a decent antibody spike after the vaccine. My maintenance immunosuppression is very low in general.
There’s not enough data or guidance for medication changes around vaccine time to clinically make changes.
Still, was advised to keep wearing a mask, avoid crowds, don’t put myself at unnecessary exposures.
All of that said, I think my tx doctor doesn’t even know who I am. :rofl; I get it, he’s busy (but doesn’t see a lot of tx patients outside of his main specialization, just those with a pancreas) but he seems to have this idea I was recently transplanted and should be seen more often, which isn’t the case once a patient is over a year post-tx. More statements gave me this clue too. To be clear, I’m not looking for some sort of hovering situation, but for a doctor to just not confuse me with another patient in his recollection. Do your tx docs have an understanding of your particular cases?
See what happens at the next appointments..
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OK, thanks for that, YouTea. May I ask what your dose of Myfortic is? I'm not sure what qualifies as a "low dose" since I was under the impression that there was a "standard" dosage, but I understand we are not all "standard" patients.
I, too, have read that there just isn't enough data (or time) to study the effects of lowering the dosage of this drug on the creation of antispike antibodies. I'm not sure I personally would be willing to be a participant in that sort of study, to be fair.
My tx team knows exactly who I am. If I have a general inquiry, I contact my tx coordinator, and when I attend my annual checkup, I see the tx neph's assistant who acts like she remembers who I am! What strikes me is that all throughout my tx experience which, counting the pre-ex years, I've been seen by only two men. One was a cardiologist who reviewed my pre-tx stress test results, and the other was the surgeon himself. Both had a rather dismissive attitude, which I was fine with. But my tx team, the "day to day" team, are all women, and I am really happy with them. Honestly, though, my case isn't all that memorable, thank goodness.
I'm looking forward to hearing about what you learn at your next appointment. When will that be?
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Hey MM,
Yes, standard dose is 720 mg taken twice daily (1440 mg) but I just take 360 mg twice daily (720 mg — half of the regular dose) because on the standard dose, BK Virus showed up.
I agree that I wouldn’t be a participant in any such study unless they stuck me in a hospital and monitored graft function like a hawk!
To be honest, I think they only recognize my surname on the file because when I married my husband he bestowed me with a jumbled alphabet for a last name. But other than that, it seems like they have no clue. :rofl; Well, it is good to know that yours know exactly who you are and that must be comforting in a medical sense!
I have two appointments Thursday, so hopefully learn more then. :)
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Hey Youdkjnofiesgnot Teaoinoblienves,
That's interesting about your myfortic. Makes sense.
Tomorrow Thursday, or next week Thursday? Inquiring minds want to know!
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Tomorrow Thursday...
It’s also the same day the premier of the province will announce new restrictions. Please pray they don’t call for a lockdown until I am on the plane home on Saturday! Don’t want to be kicked out of the hotel!
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Thanks UT for the dosage info. I too am on 360 twice a day of the Myfortic. They reduced it not long after my transplant due to digestive issues. I had my second Pfizer shot yesterday. Fingers crossed!
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Tomorrow Thursday...
It’s also the same day the premier of the province will announce new restrictions. Please pray they don’t call for a lockdown until I am on the plane home on Saturday! Don’t want to be kicked out of the hotel!
How awkward would it be to be stranded like that! I'll pray that it doesn't happen. We're all looking forward to hearing from you after your appointment.
So, tigtink, you're on a reduced dose of myfortic, too! Oh, that's interesting.
I get my second Moderna shot tomorrow (Thursday). I was really excited about getting the first one and didn't mind having a sore arm afterwards. I thought protection would be worth the discomfort. I'm not so excited about the second shot and will probably resent the injection site pain. Harumph.
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Hey tigtink , can you tell me about your tummy troubles that led to the drop in Myfortic dosage?
Alright...
Here is the deal with the final appointments with Infectious Disease.
I kind of got into a little argument with a doctor as he believes if I have a letter from the tx team (they had all been sent out, but I didn’t receive one, sucks to be an out of town patient!), that I can be vaccinated now, no matter where my public health authorities are on their vaccination scheme, because as of now, transplant patients are at the top of the list. I disagreed because... bureaucracy. I just ended up agreeing to shut him up. We’ll see.
In regard to the Hopkins study, both doctors said it was very early, and more data still has to come out. While we should heed it, it needs to be taken into perspective, as well... it is early. We can’t put all our eggs in one basket and get depressed.
Before they make any kinds of decisions about changes in treatment regimens, they want more data about immunogenicity :kiss; in tx patients and some more info about the drug interaction with the vaccine (as in, they understand basics, but I guess they want more actual details than generalities.) Since they don’t plan to run their own study, it’s a matter of waiting for more data and literature to come out scientifically and academically. They very much stand behind vaccination though.
Again, they stated the same as my appointment on Tuesday. I am young, on low maintenance immunosuppression, and my immune system is still in good shape, based on my overall health, so their bets are on an immune response. Maybe not a super duper immune response, but enough for some protection. All my other vaccines have currently worked.
One doc went as far to say take the first vaccine offered, doesn’t matter the name. Well, they aren’t giving Astra Zeneca to those under 55 in Canada, so that narrows it down. :P
I asked about follow up blood work after vaccination, but it’s a little complicated because I’m from such a far distance. It’s not necessary, but could be arranged if patients want it.
Then it just turned into a discussion of which other vaccines I should get. Probably going to be the most vaccinated person alive!
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Thanks for all the good information from your appointment. There is so much we do not know at this point. All we can do is wait and hope for more positive results.
As for my Myfortic story, it is not a pretty one. I was on the full dosage of two 360 mg twice per day for the first month and a half after my transplant. I did fine the first week, then started having a lot of gas followed by weeks of chronic diarrhea. They kept testing me for every kind of virus or infection they could think of, assuring me the results were negative and this would resolve with time. It did not resolve, and at my 3-week followup appointment they admitted me for severe dehydration and elevated creatinine. I was given IV fluids, sodium, magnesium, iron, and two blood transfusions to get my hemoglobin up while they did every test imaginable, including a CT scan, colonoscopy, upper endoscopy, endless blood and stool tests, and several consults with GI doctors. My creatinine came way down after my electrolytes were stabilized, just in time to avoid a biopsy, but the diarrhea never stopped. After days of pondering all of this, they finally dropped my Myfortic dose in half and within a couple of weeks the diarrhea began to subside. Then of course they raised the dose again and the diarrhea returned. Eventually they cut the dosage in half again and I have been fine ever since.
So you can understand why Myfortic is my least favorite drug and why I thought to myself “Of course it is the Myfortic that interferes with the vaccine!” My kidney is still going strong, so I am not complaining. Just not fond of that particular drug.
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Had my second Pfizer covid vaccine on Tuesday. Had it at 6 p.m. and at about midnight I got very cold (not chills) lasted five minutes. Then my legs started hurting real bad and slight headache. Lasted an hour or so. Couldn't sleep. By morning everything fine. I coincidentally had forgotten to take my mycophenolic Tuesday night and Wednesday morning. This never happens. Anyway, I heard if you had a reaction to the vaccine that means your body is going to fight the virus. I have to think we have some coverage. By the way I am today, two years post transplant.
Just for your information, a nurse mentioned that when they had a patient with covid last summer, they stopped the rejection medication while treating them.
Be well.
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UT, thanks for that summary. I suppose we'll just all have to sit tight and wait for more data to emerge, but I want answers NOW!
tigtink, I'm surprised the docs didn't immediately suspect that it was one of your immunosuppressants that was the villain in your diarrhea saga. It's awful that you had to be subjected to all of that testing. Well, I suppose now you know.
jenb, what that nurse said to you about their covid patient is really interesting. I've often wondered what they do regarding covid patients who are also tx patients.
I had my second Moderna vaccine earlier today, and whereas after the first shot I had a sore arm for a couple of days, so far today I feel absolutely nothing. A big NADA. I don't know if I'll have any sort of reaction as the evening wears on and the days go by.
Figuring that we'll all be wearing masks for the foreseeable future, I decided to go ahead and order some pretty ones for spring and summer. And, I ordered 4 really cool stretchy headbands for my now long covid hair. Oh, and a pair of ear cuffs. I've just discovered the joys of Etsy. This is a big deal for me because the last item of adornment or clothing I bought for myself was a new swimsuit in 2018.
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Hello all. I can confirm that I'm on the mycophenolate 360*2 twice per day. Its interesting to learn that that is a standard dosage. I guess the manufacture does some testing and comes out with a recommended dosage and the individual programs only make changes if the transplant recipients are having problems. I would think that the treatments of transplant patients are highly customized, but I guess they have standard templates they follow unless they are forced to make changes.
Regarding antibodies before my second dose - my results were negative to antibodies.
When I went in last Thursday to LabCorp it was clear there were going to be issues, the computers were not printing labels, and then when they were able to and the tech printed labels for my monthly labs I asked if he had labels for the antibody test and he said no they have to do that manually and they will send the blood to the requestor directly ??? I could tell something was up there and the next day I didn't receive the results on the LabCorp site. I waited until Wednesday to reach out to the study and luckily after I told them where I went they were able to follow up and the lab was going to fax them the results. So last night after I week I received the results via the study - but unfortunately I don't have the LabCorp results which previously told me I was <40. I had hoped I would be able to see if that number changed slightly to say <60... So now I'll wait until the end of this month for my 1 month after labs to get the LabCorp version.
MooseMom the webinar is on their website here: https://transplantvaccine.org/study-results-and-webinars/ its under Webinars for study participants include study updates and Q&A: March 23, 2021
Random other positive personal note, my wife and I are both still working from home so we booked an AirBnB in Asheville NC for a month to work from somewhere else. Call it a trial retirement - we are about 3 years out and this is a good opportunity to see if we enjoy going somewhere else for an extended living stay. We will pack up the two cats and drive down from the DC area next Thursday and Friday. I'm glad to be in the study so I know I need to keep up my caution up post vaccinations but look forward to hiking, doing our daily walks in a new area and visiting a few of the numerous breweries and restaurants within walking distance of our place. As long as the outdoor tables are well separated and the venue is not crowded we have been willing to doing some outdoor eating or drinking. Asheville sounds fairly liberal so I hope people are masking up like they do around here.
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Thank you for your post. Regarding the standard cocktail of immunosuppressants, I have the impression that it is tacrolimus dosages that seem to vary from patient to patient. In the early days after my tx, it was tac that they faffed about with until they found the right dosage for me.
OK, pre second dose antibodies negative. Got it.
Looking forward to hearing your 1 month after labs. I'm hoping for some improvement.
Thanks for the link to the webinar. I'll have a look this evening.
Good for you for making a leap out into the world. I think you and your wife are very cognizant of possible risks and can tweak your routines accordingly. We've had dinner out a couple of times lately in restaurants we know well and trust in keeping to distance requirements. Even if I had a stonking amount of antibodies, I'd still take those precautions. I hope you enjoy your time in Asheville; it's a really nice part of the world.
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The difference is mycophenolate is not measured in the blood, so the dose is a best guess. I'm on 250 once a day.
Tacro levels are adjusted to obtain specific target values in the blood (higher shortly after transplant than later on), so that does can be calibrated more easily. I take 1mb twice a day.
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I believe there are different standard dosages depending on whether you take the original Cellcept or the delayed release Myfortic. I am only familiar with the Myfortic dosing.
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iolaire, it looks like one needs a passcode to access the recording. Did you participate/have you seen the recording? If so, is there anything we would learn from it that you have not shared with us already? Thank you!
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iolaire, it looks like one needs a passcode to access the recording. Did you participate/have you seen the recording? If so, is there anything we would learn from it that you have not shared with us already? Thank you!
Sorry I've trashed my invitation. There is an email on the website try emailing that to see if they will let you watch it. I tried to share everything but you probably would come back with other notable items.
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I believe there are different standard dosages depending on whether you take the original Cellcept or the delayed release Myfortic. I am only familiar with the Myfortic dosing.
The composition is such that you need different dosages to get the same amount of active ingredient.
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Not to worry, iolaire. You're always very good at telling us all of the relevant information you're given, and thanks again for that.
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Hello again and I finally had my second Pfizer-vaccination and fortunately this time it went a little bit better afterwards and I feel a little better and hopefully "it" remains like that ...
... I was told to remain very careful and thoughtful at the same time about what I am doing/touching when going out, seeing doctors etc., just in case. I was also told that having had both my Pfizer-vaccinations should not "lead me into a false sense of security" and I should continue to be extremely careful, also because of my "underlying conditions" like my kidney-transplant plus "my" Systemic Lupus & MCTD.
Good luck to everyone and best wishes from Kristina. :grouphug;
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Looking in the footnote of the John Hopkin's study letter I found reference to this letter (Free):
Early Development and Durability of SARS-CoV-2 Antibodies Among Solid Organ
Transplant Recipients: A Pilot Study
https://journals.lww.com/transplantjournal/Citation/9000/Early_Development_and_Durability_of_SARS_CoV_2.95419.aspx
This was a very small study of 18 transplant patients who were positive tested for COVID. Its an interesting read, 3 of 18 went to ICU, 1 ventilated and most developed antibodies.
Most participants (89%) had experienced COVID-19 symptoms; 72% were hospitalized. Among those hospitalized, 15% were admitted to the ICU and 8% were mechanically ventilated. COVID-19 convalescent plasma (CCP) was administered to 3 kidney and 2 lung recipients. ... In this study of antibody development among immunosuppressed SOTRs, we found antibody levels suggestive of neutralizing immunity in the majority of participants. ... Interestingly, among those who had more severe disease, there was a trend towards higher antibody levels.
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I spoke to a transplant pharmacist this morning. We talked quickly about the antibodies. She was wondering what study I was getting my information from, and she acknowledged that the John Hopkins study is the only study transplant specific. I asked if there were other studies she was following and she said for transplant specific it was Hopkins - but she made some comments along the lines of in the formal trials of the vaccines they had HIV patients and other immune compromised people and that there was delayed antibodies. I didn't get clear specifics but she made the comment along the lines that some trial participants were waiting 4-6 months for the antibodies to show up. I asked now that the the transplant center was allowed to provide vaccination to DC patients did they have a preferred provider over Pfizer and Moderna, she said they are giving Pfizer. I could not tell if that is what they can get but she said they basically didn't have a preference (interesting since the Hopkins initial report showed advantages from Moderna) but Pfizer is a few percentage points better. (I was unable to make notes as we talked.)
So informative, but as always the vaccine available to you the one get... Hopefully in a few months all of our transplant centers will start having communications about antibodies and such. Its amazing that we are were we are already just over 13 months after COVID became real here in the US.
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This is a good article about people with weak immune systems not creating antibodies. I'm glad this type of article is coming out because there is a fairly large group of people with the same worries as us.
Vaccines Won’t Protect Millions of Patients With Crippled Immune Systems
https://www.nytimes.com/2021/04/15/health/coronavirus-immune-system.html
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LOL, iolaire, just 30 seconds ago, I finished reading this from The Atlantic.
https://www.theatlantic.com/science/archive/2021/04/immunocompromised-vaccine/618596/?fbclid=IwAR2TJs3_H8vgIMvEWRmI0bCXGv_7kiyIBds3_Y8p2Gt3lHR6cuoiWRmI7G8
Thanks for the NYT link. I had actually been wondering about monoclonal antibodies possibly being used as a preventive measure rather than just a treatment. I'm glad to see this addressed in this article.
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LOL, iolaire, just 30 seconds ago, I finished reading this from The Atlantic.
https://www.theatlantic.com/science/archive/2021/04/immunocompromised-vaccine/618596/?fbclid=IwAR2TJs3_H8vgIMvEWRmI0bCXGv_7kiyIBds3_Y8p2Gt3lHR6cuoiWRmI7G8
Thanks for the NYT link. I had actually been wondering about monoclonal antibodies possibly being used as a preventive measure rather than just a treatment. I'm glad to see this addressed in this article.
Great your article has this quote from the transplant study.
Dorry Segev, a transplant surgeon and an author of both studies, told me that his team will soon publish data that show those percentages do drop after the second vaccine dose, down to below 50 percent or so in the transplant group.
So that’s sort of our target a month out where we hope to be part of the 1/2 of people with antibodies a month after the second dose rather then the 1/5 with antibodies a month after the first dose.
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Also
Robin Avery, one of the authors on the Johns Hopkins transplant study, told me. Even if antibody levels fall below the as-yet-undefined threshold of complete protection, the molecules might still be abundant and potent enough to curb the severity of symptoms, as they often do when the flu vaccine is given to people who are immunocompromised.
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This is a webinar hosted by The Transplantation Society that gathered some brains together.
The first half is a lot of basics about corona and the vaccine. At 42:00 (or around there), we get into more interesting topics. The Hopkins study was briefly mentioned. If you listen to the rest of the webinar from there, you’ll hear mentions that “antibodies aren’t everything” and other matters such a T-cell production as well as cellular immunity haven’t been investigated, but they’re important.
As well, they don’t know “clinically” how lack of protection will look just yet. Long story short — it’s early going.
Link if anything piques your fancy: https://tts.org/index.php?option=com_content&view=article&id=894&Itemid=119
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Thank you UT, that was a good overall background on covid and transplants including the vaccine response. Again they said they are seeing vaccinated transplant people in the hospital so be careful.
I will say I scheduled a J&J shot last week and told Hopkin's I was going to do it. I didn't get the shot because it was pulled and at the same time my center responded to my inquiry of the day before with a recommended against the additional J&J shot because of it being stopped. Down here in Ashville there is LOTs of supply. Hopkins responded asking if I wanted to participate in another study J&J related looking at T and B cell response, it would have required 5 vials of blood sent to Hopkins which would have been a problem because I'm on vacation and it would have been difficult to find some place willing to pull the blood. Anyway it didn't happen, but I'm happy to know they are looking at those T & B cells because that keeps being suggested as a non measure thing that might help us beyond antibodies. On Monday the 26th I'll get my 1 month after the second dose antibody test.
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Iolaire, indeed, that was one of the more stark moments of that talk: transplant patients who have been fully vaccinated still ending up in hospital. Definitely a good reminder to treat this thing as seriously as in the beginning.
Thank you for sharing that info about the T & B cells study! (Even though it did not pan out on your end.) Obviously, someone had to be studying it because it is an area of investigation that may denote some sort of protection outside of antibodies, but it feels almost good to know for certain a place like Hopkins is doing it.
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There was an interesting Covid-research taking place in Italy (also in Sicily) about kidney-transplants and the Covid-Virus:
https://link.springer.com/article/10.1007/s40620-020-00794-1?sap-outbound-id=C756B690CF83C55C21C5475BAD1C850E964E8010&utm_source=hy
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I received my antibody results for my one month after my second shot (Pfizer) today. My negative to antibodies range is unchanged at <0.40 - that's the same range I had prior to my first vaccination shot.
SARS-CoV-2 Semi-Quant Total Ab
SARS-CoV-2 Semi-Quant Total Ab
<0.40
Reference Range: <0.80 U/mL
This sample does not contain detectable antibodies against the
SARS-CoV-2 spike protein receptor binding domain (RBD).
Interpretation:
Negative <0.80
Positive >0.79
J&J shorts are again available same day around my temporary home so I'll probably get one of those soon. Its time for an AlloSure test so I might have a phlebotomist coming by, if that happens maybe I can get Hopkin's blood tubes filled.
My work is trying to motivate vaccinated (only) people back into the office. They are running daily drawings of $10,000 to people in our offices so its clear that as some point soon real pressure will develop to get everyone back in the offices.
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iolaire, I have heard anecdotally from a few people who do take mycophenolic acid and have had both shots that they have developed antibodies after 2 months. I don't know if this is just a fluke or if it is a real reason for hope. I'm not quite sure to make from these stories, and I have not heard any verification of this from any "official" medical body.
What is your reasoning behind getting the J&J shot? Is this something JH or your tx clinic has proposed/recommended?
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I know you didn't ask me MM, but I was hoping to get the J&J shot because I hate needles and it means one less needle in my arm.
But I was also told to do the right thing by not 'vaccine shopping' and the J&J vaccine was pulled out of circulation, so I ended up with Pfizer.
I've was on Cellcept (which I think is mycophenolat) when I got the first shot, but I'd already been having a lot of GI issues with it and my Dr has now switched me.
I get my second shot on Saturday.
I really hope it works. I hate the thought of getting shot up with needles and not have it do any good.
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Thanks M&M. J&J is a different technology so I'm interested in that. Plus I'm away from home so I don't want to think beyond the single shot.
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Thanks M&M. J&J is a different technology so I'm interested in that. Plus I'm away from home so I don't want to think beyond the single shot.
Oh, I'd be interested in the J&J, too. Did you ask your tx clinic if they thought this might be worthwhile, or did you just decide for yourself that you might as well; why not? Do you know other people in the study who are considering doing the same?
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I know you didn't ask me MM, but I was hoping to get the J&J shot because I hate needles and it means one less needle in my arm.
But I was also told to do the right thing by not 'vaccine shopping' and the J&J vaccine was pulled out of circulation, so I ended up with Pfizer.
I've was on Cellcept (which I think is mycophenolat) when I got the first shot, but I'd already been having a lot of GI issues with it and my Dr has now switched me.
I get my second shot on Saturday.
I really hope it works. I hate the thought of getting shot up with needles and not have it do any good.
I hope it works for you, too! If you have to have a needle stuck into your arm, you want there to be a point! (pun intended lol).
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Here's a Mayo Clinic study from Florida that just came out. It is a small sample, only seven people, 2 who received one dosage of mRNA vaccination and 5 who received both shots. All tested positive for COVID after vaccination and only one showed any antibodies after vaccination.
https://www.eurekalert.org/pub_releases/2021-04/mc-mcr042621.php
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Thanks tigtink that is a good writeup. I feel like fairly soon there will be more pressure from my work to get back into the office so real papers like this will be helpful should I need to justify my risks.
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Thanks M&M. J&J is a different technology so I'm interested in that. Plus I'm away from home so I don't want to think beyond the single shot.
Have there been any studies on the efficacy of the J&J vaccine on SOT patients? All of the studies so far seem to feature only the mRNA vaccines, but I might have missed something.
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Thanks M&M. J&J is a different technology so I'm interested in that. Plus I'm away from home so I don't want to think beyond the single shot.
Have there been any studies on the efficacy of the J&J vaccine on SOT patients? All of the studies so far seem to feature only the mRNA vaccines, but I might have missed something.
I have seen nothing on the J&J. Hopkins seems fairly happy to have me in the J&J study. I have an AlloSure blood draw on Tuesday so I’ll try to get the blood for Hopkins then and get the J&J shot soon afterwards.
At this point it looks like the pressure is building for return to the office, and we want to continue to do more out things so I feel like it’s best to give J&J a try. It’s an easier decision since vaccinations are readily available here. I signed up on a grocery pharmacy website on Sunday (trying to see availability slots) and received a message on Monday both that Moderna and J&J was available as soon as that day.
I feel like it can not hurt to much to get it since things are looking poor on the mRNA side.
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Apologies, iolaire, as I must be having some sort of brain fog, but to make sure I am understanding, you are in a J&J study that is not affiliated with Hopkins? Is that right? Who's conducting the study? The J&J vaccine is easily available (or, so I understand) here where I live, so I am seriously considering getting it, too. I can't see where it would hurt, but I think I'd talk to my clinic first.
Please keep up updated on this! Thanks, and good luck!
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Apologies, iolaire, as I must be having some sort of brain fog, but to make sure I am understanding, you are in a J&J study that is not affiliated with Hopkins? Is that right? Who's conducting the study? The J&J vaccine is easily available (or, so I understand) here where I live, so I am seriously considering getting it, too. I can't see where it would hurt, but I think I'd talk to my clinic first.
Please keep up updated on this! Thanks, and good luck!
John Hopkin's is doing the J&J. I learned about it when I told them I was getting it as a booster. Remember I'm in a study already and submitting via LabCorp data for my Pfizer shots. If you are going to get it reach out via https://transplantvaccine.org/ and see if they want your data. Keep in mind the John Hopkin's J&J study is shipped vials to you that you need to get filled somewhere. At this point it feels like why not...
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OK, I understand now. Thanks for your patient explanation! I didn't realize that JH was undertaking this study; it makes sense that you are participating. I can't wait to hear more from you about this. Enjoy your "vacation"!
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I received the J&J shot (booster for me) yesterday, had a bit of a sore arm initially but it was mostly gone by the nighttime. I was unable to do the blood draw for the study prior to vaccination but they still want my blood two weeks after.
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I received the J&J shot (booster for me) yesterday, had a bit of a sore arm initially but it was mostly gone by the nighttime. I was unable to do the blood draw for the study prior to vaccination but they still want my blood two weeks after.
Thank you for being our IHD guinea pig! I can't wait to hear what you find out.
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Sorry folks the study results are out for patients one month past the second vaccination - 54% built antibodies, usally younger people who received the Modena vaccine.
https://medicalxpress.com/news/2021-05-transplant-recipients-vulnerable-covid-vaccination.html
"While there was an increase in those with detectable antibodies—54% overall—after the second shot, the number of transplant recipients in our second study whose antibody levels reached high enough levels to ward off a SARS-CoV-2 infection was still well below what's typically seen in people with healthy immune systems," says study lead author Brian Boyarsky, M.D., a surgery resident at the Johns Hopkins University School of Medicine.
"Based on our findings, we recommend that transplant recipients and other immunocompromised patients continue to practice strict COVID-19 safety precautions, even after vaccination," Boyarsky says.
...
The researchers also found that among the participants, the most likely to develop an antibody response were younger, did not take immunosuppressive regimens including anti-metabolite drugs and received the Moderna vaccine. These were similar to the associations seen in the March single-dose study.
https://pubmed.ncbi.nlm.nih.gov/33859151/
https://www.news-medical.net/news/20210506/Study-Second-vaccine-dose-still-makes-organ-transplant-recipients-vulnerable-to-COVID-19.aspx
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Also I wanted to call out this quote:
https://pubmed.ncbi.nlm.nih.gov/33859151/
Participants who experienced pain (aIRR= 1.111.662.47, p=0.01) or redness (aIRR= 1.833.928.41, p<0.01) were more likely to develop an antibody response to D1 of mRNA vaccines.
Based on member reports this might be good news for some of transplanted members. Unfortunately my pain on all three shots has been short lived.
And since I'm posting again here is an NPR story from today on transplants and vaccines: https://www.npr.org/sections/health-shots/2021/05/07/994260770/vaccination-against-covid-does-not-mean-immunity-for-people-with-organ-transplan
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I was waiting for you to post today, iolaire, because I read about the latest results only yesterday. I thought the NPR piece was concise and appreciated the participation of Dr. Segev in the interview. I was eager to get your take on all this. So, thanks for posting.
So, it's time to move forward as the bright sparks figure out a way to help us. People need to understand that it's not only tx patients who got the end of the stick, but also many other patients who are immunosuppressed by specific drugs that block specific parts of the immune system to combat other specific diseases. We can become viral vectors, so it is worth taking the time and effort to protect us.
My question now becomes one about treatment because I'm coming to terms with the probability of getting covid. As everyone else takes advantage of opening up, it is going to get harder to maintain social distance and avoid non-mask wearing people. Does anyone know if monoclonal antibody treatments work for us? I've not seen any information on this.
Another ray of hope:
https://www.theguardian.com/world/2021/may/06/drug-change-course-pandemic-trialled-for-use-european-commission?fbclid=IwAR3uPSsIlEHr2rELeMa8K1S2SVh1LovhhpLHflBe_l42W7CwHFneIW7xCeA
Again, the question will be does it work for us?
I admit that I'm beginning to feel sad and anxious and rather left behind.
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Excuse my bad typing.
Have you seen this article? I saved it for future reference but now it is fitting to the question, MM.
https://onlinelibrary.wiley.com/doi/10.1111/ctr.14245
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This is older and more of a news story than scientific. But, in trials earlier on, SOT recipients were one of the groups earmarked for monoclonial antibody therapy:
https://www.prnewswire.com/news-releases/hundreds-of-people-at-risk-for-severe-covid-19-avoid-hospitalization-with-new-treatment-301231079.html
I will have to dig through all my stuff (lots...) but I recall one paper that stated pausing the use of mycophenolate was also part of the wider treatment program of hospitalized tx patients.
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Excuse my bad typing.
Have you seen this article? I saved it for future reference but now it is fitting to the question, MM.
https://onlinelibrary.wiley.com/doi/10.1111/ctr.14245
Thanks for this as I had not seen it. What I find interesting about it is that there were "other interventions", ie medication modulation.
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This is older and more of a news story than scientific. But, in trials earlier on, SOT recipients were one of the groups earmarked for monoclonial antibody therapy:
https://www.prnewswire.com/news-releases/hundreds-of-people-at-risk-for-severe-covid-19-avoid-hospitalization-with-new-treatment-301231079.html
I will have to dig through all my stuff (lots...) but I recall one paper that stated pausing the use of mycophenolate was also part of the wider treatment program of hospitalized tx patients.
I'm not surprised that SOT patients would "qualify" for treatment, but I'd still like to know if it was successful. I still don't know. Let us know if you find further information. Thanks for showing me this, You Tea.
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This is not even my country so it cannot help me much. But this is a good document. It discusses the therapies/medications when to use/not to use with transplant patients. For the most part the cocktail is remdesivir, dexamethasone, and tocilizumab. As well it notes that treatment of corona in tx patients does not differ much than the rest of the population, minus the management of immunosuppression. That took me for a loop.
The thing that strikes me with the monoclonal anitbodies is that they need to be started asap in high risk people so another reminder that we need to stay on top of how we feel. Though the asymptomatic tx patients stump me.
https://www.covid19treatmentguidelines.nih.gov/special-populations/transplant/
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Full one months past vaccination published at
https://jamanetwork.com/journals/jama/fullarticle/2779852
They will have a participant webinar on Friday, May 14, 2021 at 3:00PM EST. I'll report back.
I also found the LabCorp allows you to request your own antibody test at:
https://www.labcorp.com/coronavirus-disease-covid-19/individuals/antibody-test
costs:
To complete your request, enter your payment information below to cover the PWNHealth fee of $10 that will be charged today. If your health plan or government program does not cover the cost of the test, you may receive an invoice from Labcorp for up to $42.13.
Even if you answer all the questions No they still recommend a test.
I was looking into self testing because this month I will not have study based antibody testing so I'll want to get my own. But I already had orders from last year via my work so I'll use those for this month. I plan to do the test on Monday the 24th. We leave for a trip to Utah on the 29th (Canyonlands and Arches National Parks) and I'd like to know if I have any protection. Plus I plan to talk to my nephrologist about return to work when I return and if I built antibodies that discussion will be different. (Remember I have the J&J booster that hopefully could change things.)
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Hey iolaire,
I am truly looking forward to - and even excited about - any information you can provide about the J&J booster once all your data comes back. It will be definitely interesting to see if it is a positive point in all of this.
We currently don't have access to J&J but I am indeed curious to learn about its efficacy in the tx population in regard to a booster. Hopefully, in the near future, that option will be on the table here.
I'm awaiting to hear the results of the study being conducted in the UK about dose/vaccine mixing. It might open doors to getting a second shot sooner rather than later over here.
Please do share what your neph believes is the safe route in the return to work. I'd like to wait until things are more concrete in regard to remote/office before I jump back into the job market.
As always, thanks for your information. I hope that you and your wife have an excellent vacation!
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Here are my notes from the call. I had to wait until I had the recording password (PM if you want that) since I had another meeting during the presentation part. One interesting item is they said they don't know what antibodies mean and they recommend it is NOT safe to assume immunity if you develop antibodies.
CDC despite opening things for vaccinated people to no masks, however they also say if you have a condition or are taking medications that we can your immune system, you may not be fully protected, even if you're fully vaccinated.
Studies looking at T and memory cell response to vaccination going on right now.
Post shot 1 only 17% developed antibodies
Younger and Modena and people further out from transplant developed antibodies and two immunosuppressive drugs resulted in less likely antibodies mycophenolate and azathioprine.
Linier response for time from transplant to building antibodies (likelihood accelerates with time from transplant)
Post shot 2 of population of 658 54% developed antibodies
Three groups’ antibodies 1 versus 2 shot
* Neg/Neg, non-responders 46%
* Neg/Pos, weak responders 39%
* Pos/Pos, boosted 15%
We don’t know what antibody level correlates with protection from infection or severe disease. Antibodies are surrogate for protection – don’t know the exact quality of that surrogate.
Showed chart of levels antibody level, people with antibodies in does 1 shot up to high boosted level, people who developed them on shot 2 were all over, some ended up to high boosted level others were barely developed antibodies. Good portion of the people had no detectable antibodies after the second dose.
No major safety issues with respect to the vaccines. Still recommend vaccination because other factors may be in play. Also recommend social network to be vaccinated, family and friends.
One of the big points here is to not assume immunity after vaccination because there's so much that's unknown right now, and because we are seeing breakthrough infections, in other word, people who have been fully vaccinated and are still coming down with COVID and some severe enough to be hospitalized. We do think it's important regardless of how robust your antibody response is to vaccination, regardless of if your antibody levels are very high, medium, or low, we do not think it's safe right now for you to assume immunity after vaccination so it's very important again to point out that the CDC recommendations.
Still be cautious even if we have antibodies
* We still feel that transplant recipients need to be extra careful.
* Outdoors is safer, transmission outdoors is far less
* Remain masked
* Remain distanced
* We worry about small indoor gatherings
France recommended opening for third does in France immune suppressed
* Working with partners to setup third does and study them
* Current vaccine approvals are not for third doses
* There are transplant patients getting third doses, we don’t know how
* If anyone is getting third does let us know so we can get blood and develop information
* Talk to your doctor
Don’t recommend adjusting antirejection drugs for vaccine.
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Great news on my side - Hopkins emailed me this afternoon with Positive Antibody results! I went in this morning and got my own antibodies long with my monthly lab work at LabCorp because I didn't expect to hear from Hopkins until my month 3 test at the end of June. They tested the blood I sent in last week for the two weeks post J&J shot. Somehow I never considered they would test that for antibodies as well since the test is all about T & B cell production and that is not approved by FDA so I'll only see aggregate study results. Lets hope my LabCorp antibody test shows the same.
I have a call out to my transplant center to talk to someone about how they feel about me returning to the office. My office is highly motivating people to come in, and only allowing people two weeks post their first vaccine shot to come in. No unvaccinated people are allowed in the building.
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This is so exciting Iolaire! I can't wait to hear the LabCorp results. You have given us all great information and great hope, Thank you!
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This is great news, iolaire, but I'm not sure what it means. Do you feel you are adequately protected now? How strong was your immune response?
I'm really eager to hear what your tx center has to say about you returning to the office. And I also will like to hear what you decide to do next.
Thank you for posting!
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This is great news, iolaire, but I'm not sure what it means. Do you feel you are adequately protected now? How strong was your immune response?
Hopkins doesn’t give levels as what the level means is unknown so only negative/positive information is reported.
I don’t know if LabCorp will have levels or not because this is a different antibody test put on file by my work last June.
So, I don’t really know what it means other then I have some level of protection. So that’s the reason for reaching out to my clinic. I imagine I’m still not doing inside restaurants but will be less worried outdoors.
I’m most interested to hear GW Transplant’s views of exposure to a larger number of vaccinated people in the workplace. I would be fine/plan to wear masks in the public areas, even if others don’t need to now. But I don’t think wearing masks in the cube setting all day is something I’d want do if it’s recommended by the center - in that case continuing to work from home would be better.
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More fun as always, the LabCorp test came back negative but its a different test than Johns Hopkins has been ordering.
This is the negative test: SARS-CoV-2 Antibody, IgG, Spike
https://www.labcorp.com/tests/164055/sars-cov-2-antibody-igg-spike
This is what Johns Hopkins orders: SARS-CoV-2 Semi-Quantitative Total Antibody, Spike
https://www.labcorp.com/tests/164090/sars-cov-2-semi-quantitative-total-antibody-spike
If I go to order my own test on LabCorp the offer me a test named "COVID-19 Semi-Quantitative Antibody Test" which sounds more like the Hopkins test. I'm going to assume the tests Johns Hopkins run are similar to the ones they request from LabCorp. For now I'm going to plan around test that Hopkins ran on my blood.
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Thank you for the links, iolaire.
This is really fascinating.
I'm no scientist, but from reading the links, it sounds like the igg spike test is looking at a response from exposure to the virus and the semi quantitative test is looking at immune response from exposure to the vaccine. It could just be the descriptions were written by different people. I'm not sure if they can really tell whether anti-bodies have developed as a result of the vaccine or the actual virus.
It'll be 4 weeks since my second shot on Saturday and I'll be going in to get another test for anti-bodies that morning. I'm hoping they find some this time, but since I'm on 2 immunosuppresents now and had no sickness from either shot I'm not expecting any.
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It'll be 4 weeks since my second shot on Saturday and I'll be going in to get another test for anti-bodies that morning. I'm hoping they find some this time, but since I'm on 2 immunosuppresents now and had no sickness from either shot I'm not expecting any.
Other than sore arms I had no dramatic sickness from any of the three shots. I think I had lite cold symptoms from the first Pfizer but it really was not the symptoms that I hear my coworkers talk about. Best wishes for the antibody test, it made me feel much better to have a positive result.
Transplant center update:
I spoke with a physician’s assistant from the transplant center this morning. She felt with antibodies and with a vaccinated workplace its ok to return to work (her personal opinion). The doctors are willing to provide letters to people who are not comfortable returning to the office for all the reasons we know.
After we spoke a bit about how proactive my workplace is and that they only allow vaccinated people onsite, added air filters, and put glass cube dividers she was even more positive since it’s a controlled environment and wished more places would do the same. I asked about worries about no mask use in the cubes and she said it should be ok, it’s not like I’d be working with the public. I’d still mask well in common areas within the building due to the proximity and higher volume of people. We are the only tenant in our building so the vaccine policies apply to all building in the building. I expect the vaccine policy also applies to the contract security and janitorial staff. I think about the only people we cannot apply it to would be delivery folks.
I’m leaning on returning to the office after our trip next week (~June 7th). But I’m also due for an appointment with my Nephrologist (from the center), if I can get an appointment on the 9th I might wait to talk it over with him then.
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Another transplant study webinar will take place on July 8th. I'd guess a few weeks in advance of that they will publish their next study result update so I'll be keeping a look at this page waiting for it: https://transplantvaccine.org/study-results-and-webinars/
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Thanks for that, iolaire. I'll be on the lookout for some updated information. I know that Dr. Segev has been hinting around about some new vaccine news.
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Small study including T cells in both transplant and dialysis patients.
Immune responses after COVID-19 vaccination in kidney transplant and dialysis patients
https://medicalxpress.com/news/2021-06-immune-responses-covid-vaccination-kidney.html
Dominique Bertrand, MD (Rouen University Hospital, in France) and his colleagues examined immune responses after vaccination with the Pfizer-BioNTech COVID-19 mRNA vaccine in 45 kidney transplants recipients and 10 patients undergoing chronic hemodialysis.... After the second vaccine dose, 88.9% of patient on dialysis and only 17.8% of kidney transplant recipients developed antibodies against the virus that causes COVID-19. A specific T-cell response against the virus was evident in 100% of patients on dialysis and 57.8% of kidney transplant recipients. The immune response seemed to be influenced by the immunosuppressive drugs that kidney transplant recipients took, with some drugs having a greater effect than others.
Lets hope Hopkin's has more T cell data on the July 8th call.
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Sorry if this bit has already been posted/discussed here. I saw it and immediately thought I should share it. I am on immunosuppressive meds too and am concerned. Reading that maybe a third dose would help kind of offers some hope but it doesn't exactly give a peace of mind.
https://www.ksat.com/health/2021/06/14/extra-covid-vaccine-may-help-protect-transplant-patients/
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Thanks PT. I just jumped on to share the same. 1/3 had positive after the third dose so not great but an improvement.
https://www.acpjournals.org/doi/10.7326/L21-0282
https://www.nbcnews.com/health/health-news/third-dose-covid-vaccine-may-help-protect-immunocompromised-patients-small-n1270809
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Not any new info here but a nice summary of where we are with all of this.
https://www.wired.com/story/the-challenge-of-covid-19-vaccines-for-the-immunosuppressed/
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I did my three month post second Pfizer shot follow-up antibody test (and about 2 months post J&J shot) yesterday and my SARS-CoV-2 Semi-Quant Total Ab results (LabCorp) are 2.3 with the following interpretation guidelines! (I'm still positive for antibodies and its above the minimum level.) My April one month post Pfizer levels were <0.40.
Current 2.3
Interpretation:
Negative <0.8
Sample does NOT contain detectable antibodies against the SARS-Cov-2 spike protein receptor binding domain (RBD).
Positive >0.7
Sample contains detectable antibodies against the SARS-Cov-2 spike protein receptor binding domain (RBD).
test: https://www.labcorp.com/tests/164090/sars-cov-2-semi-quantitative-total-antibody-spike
I've been at work since the 7th in a fully vaccinated building/office and am still wearing a medical mask around when away from my cube. In stores I double mask. But when I quickly pop-in to pickup a Starbucks order its a single mask.
I won Starbucks for a year! So since June 15th I've been picking up a cold no sugar iced coffee/expresso/cold brew per day. When I order it for my wife she gets a salted caramel cold brew with half the syrup pumps.
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So much good news here, iolaire!!! Fantastic! I'm glad to read, though, that you are still using precautionary measures. Enjoy your Starbucks!
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Ok, sat in on today's webinar. From what I can tell my antibodies' level is a very low positive, some people posted in the chat antibody numbers over 100 (can not tell if its on same scale). Main message is even if you have antibodies you should act like you are un vaccinated but that also doesn't mean (depending on your risk level) that you have to stay home and order groceries.
Here is my laundry list of notes, un edited:
Dr Jennifer Alejo taking over (younger looking doctor great to see the next generation of smart people helping our cause)
Dr Dorry Segev
Dr Robin Avery
Dr William Werbel
Dr Borwarski moved back to surgery
7/8/2021 Vaccine study
Delta variant vs antibodies seen in transplant pts please comment
Hi, this is very important to study, and we will be doing so, but there are not available data yet in transplant patients. Delta variant tends to require ~2-10x more antibody to neutralize in the general population
Facebook group https://www.facebook.com/groups/466673867776866 for people in study with third doses (not associated with Hopkin’s)
1 month post Jassen (J&J) vaccination only two participants 17% had Ab response versus 430 59% in the mRNA group (p=0.005)
Media antibody titers: 2.39 (Janssen J&J), versus 106.9 (mRNA) U/mL (p=0.047)
EUROIMMUN
A negative <1.1 arbitrary units anti-S1 IgG
A low-positive 1.1 to 4 arbitrary units anti-S1 IgG
A high-positive >4 arbitrary units anti-S1 IgG
Time since transplant affects antibody response, medications, and other chronic conditions
Take home
Vaccines are safe
Get vaccinated
Avoid contact with unvaccinated
Transplant patients should not assume immunity after vaccination
Do what an unvaccinated person should be doing
Do not make medication modifications without consulting with your transplant doctor.
* Delta Variant
We can not prove you have protection even with antibodies. Act unvaccinated, until we better understand correlates of protection for patients, i.e., what would we need to measure to prove protection. We are not protected from Delta variant.
Antibody levels will change over time, don’t get too worried if levels decrease, studies will prove more.
Act as if you are unvaccinated.
If you are a vaccinated that lives with a transplant patient, you should still be wearing masks out. Doctor wears mask to store and is healthy etc.. If you are in transplant bubble, still be careful.
We don’t know how to interpret TC response, there are tests, we can do studies but don’t know what they mean.
No transplant info, but post-covid patients received vaccine has strong response
Should I sleep with my partner, sex, what about kids going back to school, etc. – They don’t have good recommendations, think about your risk, and talk to your doctors and such. The CDC would say an unvaccinated person is safe getting on the plane masked.
Good information rumor working with NIC to fund a single-center Baltimore/multi-center study national as third doses as booster patients. Will get good information and will allow them to officially give second doses. Also, full approval should come so your doctor can give you an off label prescription that’s approved/legal.
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Thank you, iolaire, for taking notes and sharing with us. The "rumor" about the Baltimore center is a hopeful note.
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I should have posted this in one of the generic vaccine threads, but it has an important lesson in regard to breakthrough infections and antibodies (any antibodies at all..).
It truly strikes me how this little cohort here have taken corona so seriously and this young man (a three time lung transplant recipient now with so many other issues) didn't feel the same way.
Not much to learn, but an interesting first hand take on it all.
https://www.cnn.com/videos/tv/2021/07/12/travis-flores-covid-immunocompromised-newsroom.cnn
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I have to wonder if any of this young man's doctors (and he must have so many) told him to be careful because of his immunosuppressed status. We've known since mid-March that we might not be well served by the vaccines, and this man got sick well after that. I am concerned about the apparent lack of communication.
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Excellent point, MM.
That young man is apparently famous to some extent being a disability advocate, motivational speaker, and even featured on some sappy tv show. If there is anyone that should have received a warning, it should have been this guy, because his livelihood is innately tied to people and health is sort of his gig.
I know that my doctors haven't been explicit in their post-vaccine advice (just keep wearing a mask was their advice), but they have their reasons (low rate here). A lot of information came from self research and discussions with other patients (like on here.) I guess when you have a busy schedule, doctors not mentioning much (but also, patient perhaps not asking), and not really taking the time to source knowledge the message isn't really clear.
MM, you said it best: I am concerned about the apparent lack of communication.
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I am concerned about the apparent lack of communication.
++ Yes, my center started giving Pfizer doses as soon as they could which was after March when it was starting to be known that they were not effective. I wonder what they were telling the patients they were vaccinating in the transplant center. I've received no mailing or email saying be careful. Last year a few months into the epidemic they sent a mailing about whatever the CDC recommended at that time. (Thanks UkrainianTracksuit.)
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My center finally sent out something about vaccine efficacy to the support group email.
I wanted to inform you of a transplant webinar regarding the COVID-19 vaccine efficacy in transplant patients.
This webinar is hosted by the Gift of Life organ procurement organization and is taking place virtually tomorrow, Wednesday July 14th from 3pm-4pm.
Transplant Webinar: COVID-19: Updates in Solid Organ Transplantation
Description: Join us to learn the current state of the COVID-19 pandemic, the COVID-19 vaccines and their efficacy and safety in transplant recipients, and current federal and local regulations around mitigation strategies (e.g. masking, cleaning, social distancing).
Dr. Judith Anesi is an infectious diseases doctor at the University of Pennsylvania who specializes in caring for transplant recipients. She also performs clinical research evaluating the impact of infections on transplant recipient outcomes.
Register Here:
https://www.giftoflifefamilyhouse.org/upcoming-support-groups-and-education-sessions-for-transplant-2/
I found this information today so I apologize for the late notice! I hope that some of you are able to attend.
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Glad to see you on call XplantDad, this was the one side with new data that interested me:
Breakthrough infections in transplant recipients, one study
2197 recipients at Yale-New Haven Hospital received vaccine
6 COVID cases (6.12%) partially vaccinated
3 COVID cases (0.65%) fully vaccinated
Of those 3 all were mild illnesses and were given monoclonal antibody therapy, and survived
Very small sample set above, I don't think we can assume we would have mild illnesses. Later said the usual make sure your family and caregivers are vaccinated...
The one thing she recommends to her patients do is avoid the crowds and poorly ventilated spaces even if fully vaccinated.
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I attended the call too though I didn't say anything in the chat or asked a question. :lol; It was really positive to see all the folks with transplants lasting for so long though!
This was the new data that perked my interest too. You're right, iolaire, that this sample set is much too small to make any viable hypotheses. One thing that keeps niggling me though is how the numbers seem a bit soothing (low percentages) but at the same time the need to stick with strict protocols in many ways. Obviously we don't know all the particulars why this small number had mild infections (vaccine variable omitted), such as their state of general health, age, etc. So best to be safe than sorry and keep on as we have been.
One bit of silver lining I learned (thanks to a question of a participant) is that we know monoclonal antibodies as well as drugs like tocilizumab have demonstrated actual real-life positive results in transplant patients (along with the high dose steroids). I remember having a discussion on here with MooseMom about the antibodies and whether they worked well (or at all) in tx patients. The doctor said they do..so, hooray, I guess.
The key takeaway I learned from the talk is what I heard all year (even from my infectious disease team): it's all too soon to know and research is going on. Stay tuned..
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Glad to see you on call XplantDad, this was the one side with new data that interested me:
Breakthrough infections in transplant recipients, one study
2197 recipients at Yale-New Haven Hospital received vaccine
6 COVID cases (6.12%) partially vaccinated
3 COVID cases (0.65%) fully vaccinated
Of those 3 all were mild illnesses and were given monoclonal antibody therapy, and survived
Very small sample set above, I don't think we can assume we would have mild illnesses. Later said the usual make sure your family and caregivers are vaccinated...
The one thing she recommends to her patients do is avoid the crowds and poorly ventilated spaces even if fully vaccinated.
Thanks for making us aware, Iolaire. I watched from work and my wife and daughter watched from home. I really questioned the lack of them wanting people to get tested for antibodies...as her answer really didn't make sense, "We wouldn't know what to do with the results". Huh? I would think that the transplant community as a whole (Doctors, nurses, transplant researchers, transplant coordinators, etc.) should all be pushing for their patients to get antibody testing....as the 30 person test group that they are currently working off of is much too small to do anything with. It would be in everybody's best interest. I posed the question on the Zoom call but they didn't cover it...what (If any or more) antibodies would a transplant patient have if they've had both vaccines and also had Covid...like my daughter. That would be interesting to know for sure. I know that even though my daughter is immune suppressed, she's got a good immune system and when she does get sick with anything, she gets better quickly!
Thanks again for the heads up Iolaire. BTW, how is everything going with your transplant?
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I really questioned the lack of them wanting people to get tested for antibodies...as her answer really didn't make sense
Thanks again for the heads up Iolaire. BTW, how is everything going with your transplant?
Its a cop out but I understand why they are doing it - so much is unclear. I feel like they don't have actionable guidance for people with or without antibodies so they don't even want to know - that allows them a blanket guidance of continue to maintain your production protocol. I felt better about returning to work with low antibodies (at a fully vaccinated office/building) but still I don't think the CDC guidance about vaccinated people apply to me - it would be hard for a medical professional to deal with that type of question. Not to mention they don't have the resources to answer one off questions for each patients unique situation so they need someone else to tell them how to respond to antibodies or not.
I'm fortunate the transplant is doing well with no concerns beyond the COVID worry. 4 years in now.
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I rotate between two nephs - one every 3 months. The hospital guy follows "guidance" and did not recommend the test. I asked the neph I see outside the hospital about a 3rd shot and he wanted an antibody test (he is top dog at his practice so he sets the guidance), and told me the result will tell if I need the 3rd shot urgently or should get it at a convenient time. The test came back strongly positive :bandance;
When I asked the hospital transplant neph about the local guy I see out in the burbs his reaction was "great doc, he trained me".
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On 22 July (next week!), the CDC vaccine committee (ACIP) will be holding a meeting, the second half of which will be a discussion about immunosuppressed people getting a third dose. Here is the agenda.
https://www.cdc.gov/vaccines/acip/meetings/downloads/agenda-archive/agenda-2021-07-22-508.pdf?fbclid=IwAR2p6Qlq5hiCd9mhYxqGQw6ufsJyBKLtrqs0YKTwH-am2dfrrBPQIV5rSo4
If you want to submit a comment, you can use this link once a docket number has been assigned.
https://www.cdc.gov/vaccines/acip/meetings/index.html?fbclid=IwAR3YGYxA4BUjIeWA-DxTcdwkTVVdyELZ0ya8DB_EBD1X5gJ5wjJSdw7oJto
Here is a bit more information about what will be discussed, and why.
https://www.msn.com/en-us/health/medical/cdc-advisers-to-consider-additional-coronavirus-dose-for-immunocompromised-patients/ar-AAMbO6Z?ocid=msedgntp&fbclid=IwAR3u9TQqWCvjSr5VkGnyRyzQdVZPId0AXoW_ZcEyreBil8555LO5VhALWiY
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... Hello again ...
Earlier this year I had "my" two Pfizer-vaccines within a "healthy" distance between the two vaccinations and I also had recently two Covid-check-ups (i.e. blood being taken and tested) and l feel very lucky so far, that nothing was found. (Touch wood it continues like that!!!).
Even though it is planned that from next week onwards "things" are planned to be getting easier in the UK, in terms of being social, meeting family and friends with or without wearing face-masks etc., I shall nevertheless ignore such promises and shall continue with all my strict precautions by continuing to wear my face-mask at all times outside my home and shall also continue with all my other precautions i.e. about public transport etc.. Better safe than sorry ...
Good luck to everyone and hopefully this terrible nightmare stops a.s.a.p. and I send you my best wishes from Kristina. :grouphug;
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Life is hilarious sometimes. My blood pressure is so low (84/76) today that I spent the day in bed. I realized that today was the CDC meeting that MooseMom posted about here so off I toddled to the computer. It was kismet that I logged in at EXACTLY the moment they started the discussion on immunocompromised people!
Anyway, I'm not American, so this doesn't mean much to me unless it flows down the pipeline to here, so consider this a tiny drop in the pot of friendly RUS - USA relations. :P
The following are the main notes from the meeting. It may be a case of TLDR but it is in fact only 767 words of main points.
Immunocompromised people are at higher risk for prolonged COVID infection and viral shedding. The same group has low antibody and neutralization titers to the virus.
As much as we are concerned about the activities of others, we ourselves are more likely to transmit corona to members of our household, due to lack of vaccine efficacy and easier ability to get sick.
In the US, 44% of hospitalized cases are due to breakthrough infections in immunocompromised people. In Israel, it is similar, at 40%.
A big point of contention that arose is that immunocompromised people should not be treated as one monolithic group. For instance, those with inflammatory bowel disease presented an 80% reaction for antibodies once vaccinated after a second mRNA vaccine and hemodialysis patients actually had a very robust reaction to vaccination. In fact, hemodialysis patients did the best in a comparison with those with specific cancers, organ transplant and those on immunosuppressive therapies (not including tx). Organ transplant recipients fared the worst. There was supposed to be a reference list at the end to see the source of this data, but it never showed, still I will look.
33-50% of those without any antibody response to a first series of vaccination had a response after a third booster dose.
This was a big question from the last webinar that was mentioned here: Should immunocompromised people undergo antibody testing post-COVID-19 vaccination?
Word for word from the slides (with some word omissions):
- utility of serologic testing or cellular immune testing to assess immune response has not been established
- exact correlation between antibody level and protection remains unclear
- commercial antibody and cellular immune testing may not be consistent across laboratories * one doctor noted there is still a variety of thresholds and cut offs
- don't recommend unless in a research study
More evidence is needed in regard to vaccine mixing, though a Pfizer + AZ had better results than just two AZ.
Monoclonal antibodies are a-okay for those at risk or severe corona or hospitalization.
At the current time, there has been no data submitted to the FDA for an EUA for third dose vaccination in this specific population. Clinics in turn have to wait for the FDA to give that EUA for their standards and protocols to be amended.
As we expected, they need MORE DATA before moving forward, but more data in the respective types of immunocompromised populations. It is not one size fits all. Then, the whole interval and match schedules need to be decided.
I don't know anything about the liaison panel, but some of them had some pretty dismal questions, to be honest. It seems like they were on the fringes of immunosuppresant patient care, so I just took note of the important questions or quotes from the Q&A.
- Is there a role for a forth dose? (Yes, we seem to be in this territory.)
- How soon after monoclonal antibodies can be a patient be vaccinated?
- Since all immunocompromised people are different, there is a need to be careful with a third dose. Such as, it might not be beneficial to give a third dose to those on hemodialysis because they had a robust reaction. SO...what happens in patients with high antibodies and a third dose? Is this the source of myocarditis? (Long-time doc involved with immunocompromised patients)
Doctors that worked with transplant patients and other doctors focused on immunocompromised patients often mentioned that this whole issue is "running away from us" as the FDA is taking too much time.
One doctor noted that many tx patients have already taken matters into their own hands and finding third doses themselves, but this in turn leads to issues of equity. Those more highly educated are more likely to receive a third dose.
At the same time, doctors feel their hands are tied, because they don't have guidelines and protocols from the FDA.
Transplant patients are already scared as all hell. A patient that was infected in a healthcare setting was mentioned. Patient had to go because it seemed as though they were recently transplanted (kidney).
One said boosters may not be the answer. Rather, strong circles of protection should be implemented. (Have all close contacts vaccinated in other words)
Finally, Dr. Grace Lee said that there is sufficient data to move forward, but safety and monitoring by clinicians will be a key component.
This was followed up with this can't only be a shared-decision making (doctor and patient discussion) process as the need for a broad guide is way more important, for reasons of timing and equity.
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Thanks for that overview, You Tea. You summed it up nicely.
I hope you feel better soon and that your bp stabilizes. 84/76 sounds perilous. Is hypotension a chronic problem for you?
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Is hypotension a chronic problem for you?
It has been since transplant. However, I usually hover around 100/60-70. When it gets low like this though, it is my fault, such as I didn't stay hydrated like I should have the day before. I end up stuck in bed because the fatigue is overpowering. Rather than add on a medication, my tx doc told me to stay really hydrated and increase my sodium intake. That works well when I do what I should. :P
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Thanks for that overview, You Tea. You summed it up nicely.
I hope you feel better soon and that your bp stabilizes. 84/76 sounds perilous. Is hypotension a chronic problem for you?
The issue with 84/76 is the pulse pressure of 8. (Yikes!!) PP=systolic - diastolic, and 40-60 is normal. Definitely8 worth asking your MD abuot.
My BP was about 90/60 on dialysis, and rose to about 120/80 almost immediately after transplant.
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All my doctors know about it.
They know when it gets to this point, I messed up. The first time it happened I was sent right from clinic to the IV clinic for a couple bags of fluid.
After some re-hydration, I'm at 92/66 right now.
I know that low PP is related to cardiac failure, but my heart is apparently as good as it gets for a pre-menopausal woman, minus very minor tachycardia (born with it/natural/no underlying condition). It's just one of those things where doctors don't have an answer, even a cardiologist central to a major cardiology program in the country. He looked at my test results and said my heart is normal, good for my age.
On HD, my BP was so high even with oodles of drugs tossed at it, then it transitioned to hypotension. Seems to be a side effect of pancreatic transplantation, so they say.
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Thanks UkrainianTracksuit I appreciate the summary.
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Ooooh, You Tea, that's all fascinating stuff, I have to say. I'm sure, however, you are not thinking, "Oooh, this is all fascinating stuff!" when you are lying in bed. Take care of yourself.
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Great summary. I heard from my transplant clinic this week asking for the dates of my vaccine. I had ignored the message the first time because I gave them the info when I was there in March. I decided to give them the info again and evidently it didn't get into MyConnect first time around. At the same time I asked about a booster. I was floored when I heard back from an actual person very quickly saying they were in discussions about it. So as confused as I am, so is everyone else.
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Truth be told, anyone that has followed the "lifespan" and studies on the Delta variant isn't surprised. But, it's still a bummer. https://globalnews.ca/news/8073206/delta-covid-19-variant-chickenpox/
I know that doctors across the media are advising that those reluctant to get vaccinated should really get vaccinated now under these circumstances. This news is a double edged sword.
Just yesterday, I was in a conversation with someone from "Central - Eastern Europe" that does not get vaccinated for anything and they have not vaccinated their children, even with their childhood shots. This is representative of large swaths of people that originate in these countries and some aren't very bright *cough* Poland. Naturally, though masked, I was like "get away from me!"
But they were on their high horse that vaccinated people are spreading the disease and still dying from it, so no point to get vaccinated, when they can "take care of their immune system and strengthen it themselves." I can see them running with this information and causing even more disinformation. Sigh.
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I got an updated antibody test yesterday (self ordered via LabCorp.com for $10 + lab test, hopefully the lab test fees are covered by insurance), now two months post my J&J shot which was about 1 month post my second Pfizer shot, my antibodies are up to 30.4 from 2.3 last month so improving.
I fell like most Facebook transplant vaccine study group members would like to be in the 250 range and some healthy people have numbers in the 2500 range. Many members are in my new range. I’m still happy with any antibodies for now and will not worry about more vaccinations until new vaccine formulas with more variant coverage arrive.
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Iolaire, oh wise one, help me with my LabCorp Covid antibody test results. Almost 3 years after living unrelated donor and doing very well (creatinine runs around 0.8) The nephrologist ordered covid IgG and IgM for spike protein; I was expecting a numerical number, as you reported. Instead I got a 'negative' for both tests. ??? Haven't heard back from nephrologist yet, but I have had 3 moderna vaccines; 2-12; 3-12 and 8-14. Maybe 2 weeks after the third dose was too soon? maybe negative means less than 0.8? ARGGH. Thanks.
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Cupcake I also got the test "SARS-CoV-2 Antibody, IgG" and was negative I wonder if that test will tell us if we have had COVID but not trigger on the vaccine?
The test I've been getting is the "SARS-CoV-2 Semi-Quant Total Ab" test. You can order that online at labcorp for a $10 out of pocket fee to an online doctor to place the order, then the test will be billed to your insurance.
To order the test - quick method:
1. Go to this URL https://patient.labcorp.com/covid-19-antibody-test
2. Fill it out and continue - logging into labcorp account (if you don't have an account it should work but I don't know what happens there)
3. Fill in insurance and pay your $10
4. I believe the fourth step is to schedule your appointment or you could just walk in and wait until they call you
To order test - slower method with more info and warnings:
1. https://www.labcorp.com/
2. In the middle of the page in COVID-19 Resources area there is a link to "Get your COVID-19 Antibody Test Request Test", click that link and proceed
3. In the second screen select the left hand option with the big blue button "GET STARTED: Request through Labcorp.com"
4. you are now at the starting point of the quick method above, follow those four steps.
This is the number and details on the LabCorp test via Hopkin's script if you choose to work with your doctor:
164090 SARS-CoV-2 Semi-Quantitative Total Antibody
and the url for that test: https://www.labcorp.com/tests/164090/sars-cov-2-semi-quantitative-total-antibody-spike
The results from that will look something like this:
SARS-CoV-2 Semi-Quant Total Ab
< here either a value or negative if you have zero (<0.8 ) antibodies>
Reference Range: <0.8 U/mL
In the DC Metro Area the results are returned with about 1.5 days. LabCorp emails me when new results are posted.
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My MD wanted the spike antibody test, and gets annoyed when labs mistakenly process the other antibody tests for patients.
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CAREDX the allosure folks have a webinar for transplant people - GW Hospital's transplant team sent it out.
Ask the Experts: Delta Variant & COVID-19 Boosters for Transplant Patients
With the Delta variant continuing to surge, and the recent authorization from the FDA of COVID-19 booster shots for the immunocompromised, we know there is a lot of uncertainty in the transplant community. Join us for an interactive webinar and get your questions answered live by a panel of experts.
Who should join: heart, kidney, liver, and lung transplant recipients, care partners, anyone in the transplant community.
Register Here: https://caredx.zoom.us/webinar/register/6016295854708/WN_NINy43_ZS9-lnWs0amXYBg
You can submit your question ahead of time using the link below.
https://www.surveymonkey.com/r/J7XYLZN
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Many thanks Iolaire for taking the time to explain what happened with my test-I think you are so kind. I will order it myself! I have been very patient with isolating but must admit it is getting old. Dedicated posters such as yourself are the reason this forum continues to be a great source for kidney patients. Thanks again!
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The hospital booked me for a booster this weekend.
Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.
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The hospital booked me for a booster this weekend.
Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.
No, no side effects other than a bit of a sore arm. Good luck to you! I'm so glad you're getting another jab.
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I got a booster last Friday. Only thing I noticed was a sore arm for about 2 days. I did mine before they sent the email out.
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I'm glad that both of you fared well! That's good! :cheer:
The booster did a number on me - it was the worst of the 3 shots.
Nausea (was told this is a 10/100 scenario), fever, chills, and PALE. My husband kept repeating, "Oof, you look like sh!t. You're really pale!" And it's true, I did. After running some errands, I slept it off.
Feeling great today! Now just wondering if I show my 2 or 3 shots paper when it comes to our whole vaccine passport shindig going on here.
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I'm now up to 92.1 on the LabCorp SARS-CoV-2 Semi-Quant Total Ab (https://patient.labcorp.com/covid-19-antibody-test) test, up from 30.4 last month. J&J in May, Pfizer at end of February and March. My wife was tested for the first time and was right around 1,000 as a healthy almost 54 year old who received the Pfizer at the same time as me.
I've been debating a 4th shot as Virginia only knows about my Pfizer shots but I think I'm going to hold off for now. If the levels were not growing I probably would have done another shot this weekend.
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Oh I envy you, Iolaire! I did the semiquantitative test (after your advice how to order it for myself) and my level was less than 0.4. so essentially negative. I had moderna Feb 12, March 12 and August 14.
So for now I am socially isolating except for outdoor pool and golf cart rides every day. I have a virtual appointment with Barnes in October and an appointment at Advent Transplant center in Orlando in November.
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Sorry Cupcake, moderna was supposed to work a bit better.
So much of the vaccine stuff has been self serve and the medical community doesn't want to do anything until the CDC sets the guidelines. On the Transplant Vaccine group people are getting fourth shots, I don't know if that's with doctors orders or just showing up and fibbing a bit.
Have you considered heading into some random pharmacy and getting another type, say J&J since it uses different technology? It seems some states track the vaccination better than others so depending on your state you might just be able to tell a pharmacist you its your first shot. Or go to a neighboring state. Back in May when I got my third shot I used vaccine finder to search for locations with specific brands of shots which now seems to be here now: https://www.vaccines.gov/search/
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The hospital booked me for a booster this weekend.
Those that had boosters, did you have any ill-effects, as in general crappy feeling? Thanks.
Dear UkrainianTracksuit, I did have my third Covid-vaccination or my "booster" and I feel lucky because there were no direct ill-effects. Of course, I still feel very vulnerable and fragile because of my recent experience with Sepsis (no idea why and how I did "get" that ...), but my doctor thought it might me a good idea for me to go ahead and have my "booster" straight away and I did have it and had so far no ill-effects and hopefully it continues that way as I could do with a bit of good luck ...
I do wish you the best of luck with your "booster" and hopefully your husband is doing better as well and I send you my kind regards from Kristina. :grouphug;
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Thanks, Iolaire. I am hesitant to get the J&J due to the incidence of blood clots associated with that vaccine and I have 2 inherited clotting disorders (Factor V Leiden and Protein C deficiency). Guess I'll just recheck my semiquantitative levels in a month or two before I see the transplant team again.
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Hi everyone, hope you all are doing ok. Yesterday I received my fourth vaccination, no major side effects again/so far. Using my Virginia vaccine card showing the two Pfizer shots I went to a local pharmacy for the Moderna shot, the pharmacist said when mixing and matching only the booster 1/2 dose shot was available for Moderna so I got that.
I've been chugging along happy with my antibody levels (LabCorp) that slowly grew from <2, to 32, and later to 98 but in the last month there have been some talks/publications referenced on the Transplant Vaccine Study Group on Facebook where smart people are saying we should seek as strong as antibody level as possible, that's 2,500+ with LabCorp. So after reading some of that and having travel planned and winter coming I decided to move onto the next dose.
I reached out to John Hopkins and they wanted my blood again for the T/B Cell Study. Now they are sending someone to the home to draw the blood so that's great. They don't give me any info on that study but its for the greater good.
I think the results Hopkin's antibody study helped the government decided to allow booster shots. Plus it resulted in a group of patient advocates that submitted written and verbal feedback at each government planning meeting.
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Hi Iolaire, It's great to hear you got your 4th shot! I'm doing well, btw. Holding steady in stage 3b for now.
I've been wanting a 4th shot and I keep getting sms'd to schedule getting another shot, but when I tried to schedule getting one, the pharmacy said I have to wait for 6 months from the time I got my 3rd shot. That won't be until the end of February. My last anti-body level was 46.2. That was back in August. Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot. John Hopkins only say "positive" on the notices they send me.
I suppose I'm lucky in that I live alone and work from home and I'm still doing the curb-side pickup and online shopping for most things, so I'm having a low change of catching it, but I would feel better if I could beef up those numbers a little more.
The study has surveys where they ask me if I've been holding off taking meds before my shots. I haven't, but I might try that next time to give my system a better chance to develop an immune response.
I think there's a shortage where I'm at right now because they just started allowing 5 - 11 year olds to get vaccinated this week.
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Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot.
If you can afford it I highly recommend the $10 cash payment + insurance claim to order the LabCorp SARS-CoV-2 Semi-Quant Total Ab test (https://patient.labcorp.com/covid-19-antibody-test) on your own. Its comforting to know where you are. Otherwise people on the Facebook group say if you email Hopkins they will send you your numbers - but it might take a while, the email address has an auto responder saying it might take up to something like 2 weeks for a response.
I hope you are able to hold at that 3b level for a long time if not a lifetime.
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(Copy from a Facebook post.)
I received good Covid vaccine related news today. My fourth shot increased my antibody levels from 92 (positive) to the max positive range of >2500! That doesn’t change much for me - high levels of prevention are recommended regardless - but it does make me feel much better - especially with the constant Omnicron news. Vaccination history - kidney transplant medications inhibit vaccination response * Pfizer end of February - no antibodies * Pfizer end of March - no antibodies * J&J early May - low positive antibodies starting at about 2 and growing to 97 at the end October * Moderna 1/2 dose booster start of November, antibody level >2500 after a month
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Wow Iolaire that’s mighty good news. As always thanx for the update, and keep enjoying those antibodes :cheer:
Love, Cas
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That's great news, Iolaire! Congratulations! Your immune system is geared up to fight :boxing;
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Hi Iolaire, It's great to hear you got your 4th shot! I'm doing well, btw. Holding steady in stage 3b for now.
I've been wanting a 4th shot and I keep getting sms'd to schedule getting another shot, but when I tried to schedule getting one, the pharmacy said I have to wait for 6 months from the time I got my 3rd shot. That won't be until the end of February. My last anti-body level was 46.2. That was back in August. Labcorp didn't send me the results for my test from last month so I don't know if it's gone up since the 3rd shot. John Hopkins only say "positive" on the notices they send me.
I suppose I'm lucky in that I live alone and work from home and I'm still doing the curb-side pickup and online shopping for most things, so I'm having a low change of catching it, but I would feel better if I could beef up those numbers a little more.
The study has surveys where they ask me if I've been holding off taking meds before my shots. I haven't, but I might try that next time to give my system a better chance to develop an immune response.
I think there's a shortage where I'm at right now because they just started allowing 5 - 11 year olds to get vaccinated this week.
Hello fifal and many thanks for your kind updates, I do appreciate them very much.
I am wondering, though, why you wanted, as you say a 4th "shot"? Are three vaccinations not sufficient already ? Or are there "things" I have not noticed yet? Another question of mine is : how do these vaccinations react with our body and our transplanted kidney - in the long run ? Have there been some check-ups and serious medical researches done in terms of vulnerable transplant-patients and all of these Covid-vaccinations? I mention this because I don't feel very well and it makes me wonder ... it seems so very confusing also with all this Covid-panic going on ...
Many thanks from Kristina. :grouphug;
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Hello fifal and many thanks for your kind updates, I do appreciate them very much.
I am wondering, though, why you wanted, as you say a 4th "shot"? Are three vaccinations not sufficient already ? Or are there "things" I have not noticed yet? Another question of mine is : how do these vaccinations react with our body and our transplanted kidney - in the long run ? Have there been some check-ups and serious medical researches done in terms of vulnerable transplant-patients and all of these Covid-vaccinations? I mention this because I don't feel very well and it makes me wonder ... it seems so very confusing also with all this Covid-panic going on ...
Many thanks from Kristina. :grouphug;
Hi Kristina,
The CDC has found reduced vaccine effectiveness in people who are immunocompromised compared with people who are not immunocompromised. It now advises that certain people who are immunocompromised can get a fourth vaccine dose. Not only are immunocompromised persons getting less protection, what little protection they get wanes over time.
I cannot answer about transplants as I have not had one.
When it comes to research, scientists are doing what they can to get information as quickly as possible. Remember, this new virus has only existed for about 2 years now, so they have had limited time to gather data. This thread is all about a study being done by Johns Hopkins to find out more about how vaccines affect those with transplants and with compromised immune systems.
If you don't feel well, please doc to a trusted doctor to let them know your concerns. I'm not a doctor, but in my opinion for my own body - whatever side effects come with the vaccine are preferable to getting the virus without any vaccine protection.
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Many thanks for your kind answer fifal9.
Luckily, I have had all three vaccinations (i.e. two vaccinations plus the booster-vaccination) and I agree with you that side-effects of the vaccinations are better to endure than risking anything worse.
But here in the UK many people are very confused about “it all” because, for example, “many other people” like for example our Prime Minister Boris Johnson have been accused of not taking any notice of their own Covid-regulations by “having” a party with friends and then another party with colleagues etc., whilst the rest of the population is supposed to honour all of the latest Covid-regulations and isolate and not even meet with their family etc.
As you can imagine, such a situation is very confusing and also a little irritating, because it seems so illogical and no one seems to know where exactly they are ...
At the same time, I have taken all my precautions plus all vaccinations, but I am still not quite clear, whether, as some articles proclaim “we are being taken” or whether, as others claim “this whole campaign is a political-control chess-move” or whether it is real or whether it is a “hyped-up” new strain of influenza etc., because ... after all ... it is well known that every year thousands of vulnerable people die of influenza, but we hardly hear or read about it… ? As you can see, many people are confused because one new doom-and-gloom-information seems to chase the other ... :waiting;
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I've been following the covid situation in the UK very closely, and in my very humble opinion, that Boris Johnson and some in his staff acted hypocritically last year at Christmas is entirely irrelevant.
We are all adults and can make our own decisions about what steps we need to take to protect ourselves against a virus that is surging once again in a new variant form. While it would be nice to have our leaders provide a good example, we are not children, and we do not need a father figure to "show us" what we should be doing. That there were Christmas parties at No. 10 a year ago has long ceased to be of any concern. That should not inform us on what we should be doing right now.
I don't understand the mindset of people who claim we are "being taken" or that the "whole campaign is a political control chess move." Covid shut down the UK economy once and may well do so again, and I can't fathom that Boris Johnson thinks he is gaining politically from this. Quite the opposite as there are real moves underway to remove him from the Premiership.
Scientists have been studying covid for almost two years now, and yes, covid is a virus like the flu, but that does not mean that covid IS the flu. HIV is a virus, but it is not the flu. We know the genomic sequence of just about every covid variant, and the proteins involved are simply not like those we see in influenza.
Virus mutate. It's just what viruses do. Sometimes they mutate into a less contagious and lethal form, but sometimes they do not. Sometimes they jump from animals to humans, but often they do not. We've seen covid in animals already, particularly in zoos. There are scores of people who are constantly decoding the genome of covid precisely to see if mutations are occurring. This is virology 101.
Yes, many people die each year of the flu, but covid is a novel virus, and we have been caught flatfooted despite the fact that we have been warned for years about new viruses and how they will affect the world's populatoin.
People can express their "confusion" all they want, but the fact remains that we are in a different, more contagious stage of the pandemic, and the concerns are that 1, our healthcare systems will be overloaded (we are already reading that this is happening in certain parts of the US), and that 2, there will be so much illness that too many people at one time will be ill and not be able to work.
While the situation overall seems complicated, to those of us who are chronically ill or are immunosuppressed, I think it is quite simple. We get vaccinated, we get boosted, we stay away from large crowds, we mask up and keep our distance if we must go out, and we keep close contact to the very minimum, and only with those who are vaccinated and boosted. If we want to make our personal exceptions to these basic rules because we really want to be able to do this, that, or the other, then we do a risk assessment for that particular circumstance.
Everyone, please stay safe! :grouphug;
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Hello MooseMom,
I beg to differ with you, because it is very difficult for many people to decipher some scientific "gobbledygook" about the Covid pandemic and therefore people rather observe other people like the Prime Minister and others in high-ranking positions to “get an idea”...
It is therefore not irrelevant if the Prime Minister reacts hypocritically and does not even appear to take the current Covid-pandemic seriously enough when mingling with friends/colleagues at a garden-party-get-together without wearing a face-mask or take any other precautions. Such dismissive behaviour is very hurtful for people who were not even allowed to go to the funeral of their family-members or businesses going bankrupt “left, right and centre” because of the Covid-pandemic ...
If, for example you would take a walk through the SW1-part of London right now you would be surprised how very few people wear a facemask. Until a few days ago you hardly would be able to see any facemasks in shops etc. either and that is why I mentioned the Prime Minister’s ill-advised behaviour.
Our own healthcare system has already been overloaded for a considerable time and it has been announced that many more people are going to be unable to work after Christmas and New Year as it is most likely that another lock-down is looming and might come along and many more businesses might go under and it is very sad indeed for the country. If we had a thoughtful Prime Minister and a Government showing real decisive action about Covid, there would be a much better chance for all of us and much more hope to get out of this Covid-dilemma a.s.a.p. :grouphug;
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Hey!
I am having a lot of trouble accessing the site for the last few weeks. It does not load normally and when I manage to load the page, if I click on a topic or reply, I get a 403 Forbidden error. Anyone else?
Using another device on another network got me in today. :P
First and foremost, congratulations to you iolaire on those antibodies!
And to everyone else that has had the 4th booster, how did it happen?
Were you contacted by your clinic that it was a good idea or did you go out and do it yourself?
What do your records look like? We get a slip of paper from the government printed out like a receipt with all our personal information that lists the number of doses in total received and location (district) received. Like I am wondering if that system would cause a problem if I sought another jab without a 4th dose being officially approved.
Only now has there been mumbling about a 4th dose, but no steam towards it. An immunocompromised person wrote into the COVID Q & A on the national broadcaster and the ID doctor said it wasn’t needed. Then again the “generalist” ID docs consulted have been off the mark about people like transplant patients from day one so..I said something snarky to the telly.
Not that I could get one anyway… :cheer:
My husband is trying to get his 3rd shot (booster) and the waiting list is a month-long even at pharmacies.
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I am having a lot of trouble accessing the site for the last few weeks. It does not load normally and when I manage to load the page, if I click on a topic or reply, I get a 403 Forbidden error. Anyone else?
I've been able to connect fine, I have my settings set to keep me logged in so I don't actually enter a username/password each time - but login via cookies is working.
Were you contacted by your clinic that it was a good idea or did you go out and do it yourself?
What do your records look like? We get a slip of paper from the government printed out like a receipt with all our personal information that lists the number of doses in total received and location (district) received. Like I am wondering if that system would cause a problem if I sought another jab without a 4th dose being officially approved.
I've done all this myself, it was not until October that my Dr would have offered a third booster. I feel like my center is only following CDC advice, but the transplant surgeon does have some sort of study going that I was never contact about - I guess since I see the transplant nephrologist in his private practice (with the same health system) I don't get much of their info.
In my state the data tracking has been poor - there is some sort of national data but I don't know if that can be seen by anyone, maybe today a pharmacist could see Virginia state vaccinations but I'm not sure. Anyway just incase my third dose was in North Carolina (state) so I have two hand written vaccination cards and assume the North Carolina vaccination is off the books. Other states have better tracking and people are turned away for extra doses by the pharmacist.
If you are on Facebook the Transplant Vaccine Study Group is a good resource - it was formed by study participants and later opened up to people who have problems building antibody responses due to their conditions. Everyone there that don't have antibodies in the US are very excited about the limited supply of Evusheld that might give them protection. The group is doing a lot of lobbying here in the US providing good feedback to the various departments that review and approve vaccines, medications and treatments. But they have the usually mix of UK and other folks. You might be able to find some Canadian specific information there or get good answers if you pose a question.
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Not that I could get one anyway… :cheer:
My husband is trying to get his 3rd shot (booster) and the waiting list is a month-long even at pharmacies.
If you were able to fly to the US for a day you could get as many as you want...
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When I see my neph for post-transplant follow-up (3 +3; 3 years post TX; 3 Covid vaccine short) I am going to ask him "If you were allowed to recommend I get a 4th shot, would you do so?". And, I'm certainly not going to ask that in a recorded mechanism like email or text. I expect he will give me an honest answer.
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The CDC has already approved a 4th shot for immune compromised people (approved on October 25) but only 6 months after the 3rd dose. The approval for the 3rd dose for immune compromised came on August 13. I had my third shot on August 15 so I will be eligible for the 4th on February 15 unless they change the current guidance. For us, the third shot is considered an additional primary shot and the 4th is considered a booster.
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Okay, thanks for the replies
Canada is just behind as usual.
I had my third shot in early September shortly after the release of a study out of University Health Network in Toronto that it was recommended for transplant patients. The morning the government said they were opening up third doses to a narrow group, I got the call to book.
Just recently (I guess the last month?) third doses were available to the general population so there’s the rush/emphasis on that now.
It is interesting how the CDC has already approved 4th shots for immunocompromised and this is the headspace North of the border:
https://beta.ctvnews.ca/national/coronavirus/2021/12/20/1_5710225.html
British Columbia seems to be following the 4th shot protocol to be rolled out in the next weeks:
https://beta.ctvnews.ca/local/british-columbia/2021/12/7/1_5697710.amp.html
I’ll just wait for news then. I’d be eligible for a 4th shot in March so lots of time.
We live minutes away from a land crossing to the U.S., but sadly, my husband cannot get a visa to cross the border. He gets denied all the time so no impromptu Walgreens stroll for him.
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Two months post my fourth vaccine my antibody level remains over 2500 so that looks great.
My work sent us home on the 21st (if we wanted to) with a return to office date of the 6th, that was pushed to the 18th and now last night pushed to the 26th. I started the process to request a longer return to work and will virtually meet with my nephrologist next week to ask for him to help with the documentation. I'm planning on asking for something along the lines of return to work when spread is back to the November 2021 levels pending his advice - the fact that its a virtual appointment should mean he is taking this seriously. Parents with unvaccinated small children can stay home until Feb 16th, it sounds like they don't need to provide the six pages of medical justification I do :-( My 83 year old mother in-law boosted, now has COVID in NYC area, probably caught during emergency dental work last week. But overall things continue to feel good.
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:cheer: Big congrats on those antibodies! :cheer:
Just wanted to say how badly it stinks that you have to fill in 6 pages of medical justification! What could possibly be needed in 6 pages to basically say SOT recipient and on immunosuppressives? I understand policy and bureaucracy, but it just stinks. Thank goodness your neph will help you along! You do not need to be told this (as you already know) but it is very smart move of you to push back the return to (in person) work date. It is a jungle out there.
In other news...
I didn't know this news came out ??? because I've been neck deep in a hydrocarbons project, but my husband told me he saw on the news this morning that 4th doses have been approved in Ontario. Naturally, he told me after work (now) rather than before he left. They are offering 4th shots 84 days after the 3rd jab. It has been over 84 days for me so I have a lot of time in the bank! Guess I just need to wait for someone to call me...
https://globalnews.ca/news/8509178/ontario-covid-4th-doses-immunocompromised/
He is still waiting for his third jab though now he qualifies for a 4th with his new med. :P
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4th doses have been approved in Ontario. Naturally, he told me after work (now) rather than before he left. They are offering 4th shots 84 days after the 3rd jab. It has been over 84 days for me so I have a lot of time in the bank! Guess I just need to wait for someone to call me...
https://globalnews.ca/news/8509178/ontario-covid-4th-doses-immunocompromised/
He is still waiting for his third jab though now he qualifies for a 4th with his new med. :P
That’s great it is good we are getting more shots.
I do hope we are doing more to get shots out to the rest of the world. There of been a few stories of the shot coming out of Texas that’s basically open source source for the world so I’m hoping that gets out and has an affect.
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I hope I get boosted before I travel to my tx appts especially with the mantra now that "everyone will catch Omicron."
I truly hope that Corbevax is a game changer in those countries that cannot procure doses. DR Congo and Burundi immediately jump to mind. The fact it has been licensed for production in Botswana is positive and the lack of a need to keep it at those ultra frozen temperatures is great. It will be interesting to track dose administration and how it affects national level rates once it is fully on the ground!
Even with vaccine doses available, there are so many systemic issues that it is truly sad. Doses have gone to waste (they say around 1 million in Nigeria and 400K in Uganda) and there are so many issues inherent in this too. There was not an adequate number of syringes to administer all doses and it is said it will get worse once more doses are available! Truth be told, I am as dumb as a box of rocks, but if the powers that be (not the poor countries to be clear) know that syringes are not domestically produced, and these countries in general lack the most basic medical supplies (cotton swabs, alcohol pads, IV tubing, etc), they should see another problem coming, so be proactive. But sigh...
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Just an update: The CDC has revised its guideline for immune compromised. Instead of 6 months after the 3rd we can get the 4th shot after 5 months. My 5 months was reached yesterday, so I made an appointment for this Wednesday.
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Just an update: The CDC has revised its guideline for immune compromised. Instead of 6 months after the 3rd we can get the 4th shot after 5 months. My 5 months was reached yesterday, so I made an appointment for this Wednesday.
That's great news!
I'm reading this is only for the Pfizer (Pfizer-BioNTech) vaccine.
...people can now receive an mRNA booster shot 5 months after completing their Pfizer-BioNTech primary series. The booster interval recommendation for people who received the J&J vaccine (2 months) or the Moderna vaccine (6 months), has not changed. https://www.cdc.gov/media/releases/2022/s0104-Pfizer-Booster.html
I did Pfizer, so I can get mine at the end of this month technically, but I think I'll still wait until end of next month. My dr has changed my meds recently and so I've been doing a lot of labs. Bloodwork is the only way to see how my cyclosporine levels are doing.
I still plan on reducing my meds about a week before my next shot, and I don't want it to interfere with all the tests I'm currently going through.
I'm also finally taking iolaire's advice and getting a quantitative test done to see what my antibody levels are. I'll get the booster know matter what the level is, but it will be nice to know before hand and then I can test again later - it sure would be nice if the John Hopkins study would give quantitative results instead of just positive/negative.
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Hello again, ... I also had all the Pfizer-vaccinations plus the Pfizer-booster ... and also my flu-jab ... but ... many people here are getting very confused because our so-called "elite" (i.e. Prime Minister, Government-Ministers, their friends, associates and many others etc., not to mention some of the Royals) seem to have celebrated one party after the other - through the whole lock-down-time, without bothering about any Covid-protection whatsoever - and, according to the latest news, they did not even bother to wear a face-mask either ... and so, naturally, many people are openly wondering, what these Covid-protections are really all about? Do people in Government know something we don't (?) ... and ... that is currently the leading question here ...
Of course, vulnerable people like myself don't have any choice and as an extremely vulnerable transplant-patient I have to keep myself protected at all times and so does my husband and we never go out of the house without wearing our face-masks and we disinfect our hands at every possibility and ... and ... and ... etc., but we - and everyone else - do wonder why the Prime Minister, Government-Ministers and many others in "positions" etc. don't seem to bother at all and these latest news here are really a bit unsettling, to say the least ...
I wonder now, how is "it" in other countries? Is it similar confusing as it is in the UK?
Many thanks from Kristina. :grouphug;
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Hi Kristina
There's a lot of misinformation here. I don't get cable, so I haven't seen it, but I have it on good authority that there are major news networks that spread misinformation. Personally, I'm lucky that I don't leave my house often. And when I do, I'm certainly not going out partying. I mostly go to the pharmacy, double masked, get my meds and head straight home. I'm also lucky that I live in a big city in a progressive state, so there's lots of considerate people wearing masks. I see them when I go to the pharmacy.
Of course, there's people not wearing masks too. I steer clear of them like they have the plague. For all I know, they do have the equivalent of a modern-day plague. I follow another forum online where people who don't take the pandemic seriously and then get sick are lambasted. It might sound heartless, but it's a harmless, anonymous outlet for the frustration felt at the whole situation.
I guess I'm also lucky that I don't know anyone personally who has been seriously sick or died of covid. Probably because I'm mostly a loner, so I don't know many people in general. I imagine if I knew some of those people it would be harder to roast them from behind a computer screen. My spouse is in a more conservative area of the country. I've barely talked to him since this all started, but from the way he tells it - everyone where he's at ignores all safety precautions. I've even heard (not from him) stories of people being harassed for wearing a mask. I hope he doesn't get sick, but it seems inevitable considering he seems to be of the same mindset as the rest of the folks down there. I don't think he's vaxxed. And he's started going to a church, not that there's anything wrong with that in itself, but we've been married 20+ years and he never did that when we were living together. It really is the campaign of misinformation and the pressure to conform to his surroundings that's changing him... or maybe he's just really impressionable.
Religion and politics and being anti-vax all go hand in hand in the US. I'm trying to stay away from getting into politics in this reply, but unfortunately, the pandemic around here has become a political issue. I've heard that places like Singapore where people listen to their governments are fairing much better in terms on vaccination rates.
Speaking of the UK "elite" partying together makes me think of the Edgar Allen Poe story people have been saying echoes the current environment. All the rich people get together for a big party while the poor peasants die of a plague outside. Spoiler: Things don't end well for the party goers.
Also, concerning 'confusion' - a lot of people are NOT confused. They are just plain wrong in their thinking. They hear all the misinformation and surround themselves with people who think the same and they are all very confident in what they believe. It might be nice if more people were confused, at least then they might be willing to listen to multiple view points with an open mind.
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I asked my post transplant team about Evosheld. I was told "You can't get it from us, we are reserving our limited supply for the highest of high risk cases and you don't qualify" followed by "If you can get it elsewhere you should".
Then there is the email they sent their patients a few weeks ago "If you need monoclonal antibody therapy we recommend you look on the web to find someone who can get it for you, we can't". And this is from a major medical center that does kidney and heart transplants.
When I see my doc in person, I am going to ask if they use race based scoring in the drug allocation. I read about one hospital where each risk factor was 1 point, but being black was a 7 point bonus.
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Hello fifal9 and many thanks for your most informative letter. I do very much appreciate your kind thoughts, also about the circulating misinformation about the Covid-pandemic...
Like yourself I am also lucky that I don’t have to leave home very much right now and like yourself my outings are also mainly connected to appointments with doctors etc. and unfortunately, I very often come across people who don’t wear a mask, especially whilst walking to the pharmacy, doctor etc. and I also find it important to stay clear of them, even changing the side of the road as soon as I “spot” one of them … We are certainly living in a bit of a crazy and dangerous time right now… and I also do hope that your husband is doing as well as is possible ...
Many thanks again and kind regards from Kristina. :grouphug;
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Simon Dog the Facebook group "Transplant Vaccine Study Group" is full of people hunting for Evosheld. There are some good recommendations there and various people's reports by state. Some people are getting it, but I feel like the most successfully folks are getting it from smaller clinics as the hospitals are slow to figure out what to do and have huge numbers of higher risk people.
I spoke to my nephrologist and he was not worried about me returning to my vaccinated and boosted workplace next week. He felt with my high antibody levels an infection would be mild, but if I had ANY symptoms reach out to them and they would get me monoclonal antibodies. the antibodies were a surprise because from what I read on the Facebook group those are in very limited supply as well. He said at least in the DC area the hospitals are doing much better than last winter. He also mentioned if I had covid he might lower the levels of mycophenolate during treatment. He also confirmed that if I contracted COVID reach out to him directly or via the transplant clinic - I needed to confirm that because I don't really have a PCP and deal with him on most questions. So I'm going back to work next week if they don't delay our return to office another week. DC is still requiring masks indoors and at desks, but as you know mask use doesn't mean a ton coverage wise. So I'll need to eat and drink less so I don't go to the coffee area as much.
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Some places are giving patients extra points for being black than for having a transplant on the "who gets it" score for the scarce covid drugs.
Evosheld is even harder to find than small arms primers these days, so it's pretty extreme.
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I just received my quantitative antibodies results back. I'm at 125 now.
The way Labcorp does my results is that the printed version always shows more in the pdf than on the monitor screen. And it showed on the pdf that when I was tested for the John Hopkins study last time, back in November, my results were higher then. JH doesn't give me the quantitative number, just positive/negative. But the pdf showed they were at 307. I'm a little disappointed that my numbers aren't higher. And going down so quickly makes me wonder if I'll ever build a good amount of antibodies that will stick around or if I'll just have to get shots every few months forever and still be barely protected.
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going down so quickly makes me wonder if I'll ever build a good amount of antibodies that will stick around or if I'll just have to get shots every few months forever and still be barely protected.
If you are us based people worth zero antibodies are seeking out Evosheld. It’s very low supply but many more doses are ordered so that might be available soon to people with low antibodies.
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Nice I had my 3 months post fourth dose labs pulled for John Hopkins on Wednesday. I received the results email today and they actually put the results in the email! Still >2500.
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Hello everyone, it's been a while since I have been on here. We finally got Mayo here in AZ to agree to do the antibody testing on Holly in January...after she developed a really strong reaction to the booster shot we all took. She ended up with a fever of 103 for two days. The kidney transplant doc stated, "Well, I guess her immune system is working" :stressed;
Funny, Loma Linda Hospital (where Holly had her heart transplant done in 1990)-has been doing antibody testing for more than a year now-on their heart transplants who have had the shots.
When Mayo finally agreed to do the antibody test, Mayo's kidney transplant team shared the study that Iolaire was involved with :) . I let them know that I had already seen it.
Anyways, her initial test came out with > than 250. The doc that we dealt with was a kidney transplant doc-and she recommended a 4th booster at the 6 month time frame. I told her that two weeks prior to the booster time frame, we will get another antibody test...to see where Holly's level is at. If it's still greater than 250, we will most likely hold off.
Two reasons why:
1) Holly's heart transplant team is not 100% on board with continued boosters. The reason? Not enough concrete data regarding the long term side effects of the shot
2) Still not enough data out there for the length of time the antibodies stay at desirable levels
I did let Mayo know that as a world class hospital, they should have been at the forefront of the research (Like John Hopkins was). For the past two years, they have a group of over 400 people just here in AZ...that go for routine blood tests anyways, so why not add an additional test to start gathering data on antibody levels in S.O.T. patients? Their initial answer (and the same answer for the last year) was that they "wouldn't know what to do with the data" (also the same answer was given on numerous webinars I attended from different transplant hospitals/groups).
The latest answer I got during our last visit was that Mayo didn't have a 'viable' treatment for people-if an antibody test was done and the patient exhibited low or non-existent antibody levels. Which brings us to Evusheld. We were told that during our last visit that Evusheld is the "go to" for folks with low antibody levels.
BTW, we got a message from the Mayo Kidney transplant team that we were chosen as a possible participant for a "study" with Evusheld. We politely declined, figuring someone who had a lower antibody level would get a greater benefit
Have a great Sunday... :cuddle;
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I got an email from the John Hopkins study yesterday.
Dear Study Participant,
Thank you for your participation in our COVID-19 Observational Study for individuals with Chronic Conditions.
[/color]The U.S Food and Drug Administration (FDA) is now recommending a second booster dose (fifth dose) of Pfizer or Moderna 4 months after a first booster dose in immunosuppressed patients. For more information regarding second booster doses, please see the following link:
[/color]https://www.fda.gov/news-events/press-announcements/coronavirus-covid-19-update-fda-authorizes-second-booster-dose-two-covid-19-vaccines-older-and (https://nam02.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.fda.gov%2Fnews-events%2Fpress-announcements%2Fcoronavirus-covid-19-update-fda-authorizes-second-booster-dose-two-covid-19-vaccines-older-and&data=04%7C01%7Cmteles1%40jhu.edu%7Ca7b9421b2893496cefa808da12362f5e%7C9fa4f438b1e6473b803f86f8aedf0dec%7C0%7C0%7C637842321173059550%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000&sdata=L59mpBHP9B5vC0wFh%2BrDLvHL5f5VfaCsIFNxEWkkQl0%3D&reserved=0)[/color][/color]
[/color]In light of this announcement, we are writing to ask that if you plan to receive a second booster dose, please let us know as we would like to collect samples both before and after this dose. [/color][/color]
[/color]Additionally, as of 3/28/2022, the antibody tests administered by LabCorp can now detect antibodies up to >25,000 U/mL. We are unable to re-test any previous samples that were only detected up to >2500 U/mL.
Where I live some eligible people are just starting to get their fourth shot. I got my forth shot at the end of February. I haven't got around to getting a new antibody test yet. I think I heard they are not going to be free anymore, but that might just have been about the test kits for people checking to see if they are actively infected.
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Had my quarterly maintenance appointment yesterday. I learned the hospital I use recently adjusted the rationing criteria for Evosheld to include transplant patients, and the transplant support team is having the infusion clinic (where this hospital gives the injections) contact me for the appointments (2 shot series).
I cannot know for certain, but I am under the impression this would not have been discussed if I did not bring up the topic.
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Had my quarterly maintenance appointment yesterday. I learned the hospital I use recently adjusted the rationing criteria for Evosheld to include transplant patients, and the transplant support team is having the infusion clinic (where this hospital gives the injections) contact me for the appointments (2 shot series).
I cannot know for certain, but I am under the impression this would not have been discussed if I did not bring up the topis.
That’s great. From what I’ve seen Evusheld has been available for people who are working hard to get it at alternative site but at the large hospitals it’s much harder to find.
I got my antibody test on Friday and I’m at 3800. The test now can measure above 2500 all the way to 25000. That’s six months post dose 4, now I need to decide if it’s time for booster five.
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Finally joined the 4th shot club. Now it is up to me to track the days until my 5th shot. Fifth is definitely a go ahead though. Less red tape.
Anybody completed their 5th shot yet? If anyone is alive on here. ;D
(And oh, not a peep about Evusheld.)
ETA: About the Evusheld, based on my tx hospital allocation method, I still wouldn't receive it. I am on a medium-low dose of immunosuppression so they are focusing on those with the highest doses due to the limited supply.
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Anybody completed their 5th shot yet? If anyone is alive on here. ;D
Last week I got my 5th. My level prior 2673 U/mL on the new scale that reports up to 25k. A month prior I was at 3385 U/mL. The 5th shot was my decision without consultation. I've not sought Evusheld.
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I got my second booster yesterday. I had an argument with the lead pharmacist at my local Walgreens who took the time to print out the latest CDC guidelines about vaccines/boosters to prove that he could not give it to me. He neglected to read the whole thing, so I had to draw his attention to the tiny paragraph about recommending giving a second booster for immunocompromised people. He grew sheepish, and he allowed me to have it. Nothing is easy.
I am sorry, UT, that you are not yet "eligible" to receive Evusheld. The Infectious Disease experts I follow both on social media and on various webinars all agree that getting fully vaxxed and boosted is the most important thing for us to do. Evusheld gives you only antibodies and does nothing to trigger a T or B cell response like the vaccines do (at least in those who are able to amount an anti-spike antibody response in the first place), and it's for this reason that it's a good idea to focus on getting that fifth dose (second booster) and wait until there is enough Evusheld to get to you. If you are on a medium-low dose of immunosuppression, particularly MMF or MMA, the vax/boosters should give you more protection than given to those of us on higher doses.
Keep us posted on Evusheld/fifth booster!
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I have an early July appointment with an infections diseases MD to get Evusheld prescribed.
One of the other major hospitals in Boston administers Evusheld on a nephrologists order; the one I go to requires the ID consult.
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I had a similar moment with the pharmacist at the pharmacy too about getting the fourth shot. It took forever for them to look up who was eligible and immunocompromised people were at the bottom of the giant bloc of text. "We don't usually have people your age coming in for boosters." That took up most of the time!
As for the lower-medium dose of immunosuppression, that's the joy of BK Virus (Burger King Virus as I like to call it). Immunosuppression at a normal/high dose, damn virus titre jumps up and takes a long time (at least in this case) to get back into acceptable levels. Everyone knows this though so why state it. :lol; There's always something going on with these bodies and keeping them in some odd balance. ;D
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Until I turn 65, I have to get an MD order for my annual flu shot as the neph wants be to get the extra strength version.
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I came here to share this update but just read the sad news about kitkatz. I apologize if this comes across as really disrespectful. :'(
Today (May 31) new guidelines were released about COVID-19 care and transplant recipients. A lot of the same as a before, a lot of new nuance. Read here: https://www.covid19treatmentguidelines.nih.gov/special-populations/transplant/
My personal takeaway from this the line where lowering immunosuppression dosage ahead of vaccination is not recommended. WTF was my tx team doing then...
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Hello all. I have had 5 doses of Moderna (the last one was a half dose) and one dose of Evusheld 5 months ago. My semiquantitative antibody level with Labcorp is 110. It ain't nuthin, but its not what Iolaire achieved. I'm going to advocate for a second dose of Evusheld. My nephrologist said I may have to pay out of pocket $300, but I said I'd happily pay that.
Otherwise I'm doing great-splashing around the pools in Florida, latest GFR is 97, 4 years post transplant. Still living pretty cautiously, masking indoors, only dining outdoors at restaurants, etc.
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Glad to hear from you Cupcake, and great to read you are doing so well! Good luck with getting more Evusheld.
Love, Cas
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Good luck cupcake
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If anyone is around to answer -
How long did you wait in between your last booster and bivalent booster?
I am seeing different times. One says 5 months, another says 3 months, and another says "3 months with informed consent." Nurse handling tx patients locally hasn't returned my call.
Thanks...
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Hopkins just had a webinar on Thursday, I'm fairly sure they are saying you can get it after two months (people like us).
https://jhjhm.zoom.us/rec/share/VLyvroxJyypfWpB0aFlhAkKNgqGls2X5flGFrHQUyR962_Dc_13KmWWgA4soVE5i.IqJl-CDv_AHi3RVy?startTime=1663869147000
Passcode: transplant2022!
They also mentioned this machine learning based tool to Predicting vaccine response after a 3-dose series. I also believe from the first 30 minutes I watched that their appears to be befits to switching vaccine brands among the people who are not building antibodies.
http://www.transplantmodels.com/covidvaccine_d3/
I'm waiting to get the blood vials and do the at home blood draw for the Hopkin's study prior to getting my bivalent booster.
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I had about 6 months between my last booster and the variant (3/18, 9/11). I tried to get another booster in August but the pharmacies were like, "you've had all you can get and the new one is coming out in the fall". So I just waited. All mine have been Moderna. I just get whatever Walgreen's is handing out.
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My nehhrologist and infectious disease MD both mentioned there is some evidence switching between Moderna and Pfeizer is better than sticking to one brand.
I don't know what the evidence is regarding alternate which butt gets tixagevimab and which gets cilgavimab when getting multiple doses at scheduled intervals :urcrazy;
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I also believe from the first 30 minutes I watched that their appears to be befits to switching vaccine brands among the people who are not building antibodies.
I went back to the slides. This is not peer reviewed by more antidotal observations. The slides on this topic are start at about 18:00, specifically for dose 3 for people not building antibodies prior the switch from the first two Pfizer to a Moderna does resulted in slightly more response on the positive yes/no test and a general higher response on level side. Later on they say for a third dose J&J initial responses were not significantly different from Pfizer but at about the six month point antibody levels grew higher. If you are not building antibodies then its worth a try to change brand.