Johns Hopkins Transplant Vaccine study

[enginist]

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.

[UkrainianTracksuit]

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.

[MooseMom]

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?

[enginist]

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. 

[UkrainianTracksuit]

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!  everyone keeps moving for better jobs  ) 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.

[kristina]

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!  everyone keeps moving for better jobs  ) 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.

[iolaire]

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.

[kristina]

Many thanks iolaire, I shall ask the medics about it a.s.a.p.
Thanks again from Kristina.

[MooseMom]

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.

[UkrainianTracksuit]

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.  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?

[Naynay99]

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). 

[UkrainianTracksuit]

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!

[kristina]

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.

[iolaire]

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.

[MooseMom]

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.

[MooseMom]

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

[UkrainianTracksuit]

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....

[MooseMom]

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).

[kristina]

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.

[UkrainianTracksuit]

... 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.

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.

[kristina]

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.

[UkrainianTracksuit]

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.

[iolaire]

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."

[kristina]

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". 

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!

[kristina]

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.