Johns Hopkins Transplant Vaccine study

[fifal9]

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.

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.

[kristina]

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 ... 

[MooseMom]

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! 

[kristina]

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. 

[UkrainianTracksuit]

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. 

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…

My husband is trying to get his 3rd shot (booster) and the waiting list is a month-long even at pharmacies.

[iolaire]

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.

[iolaire]

Not that I could get one anyway…

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...

[Simon Dog]

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.

[tigtink]

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.

[UkrainianTracksuit]

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.

[iolaire]

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.

[UkrainianTracksuit]

  Big congrats on those antibodies! 

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. 

[iolaire]

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. 

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.

[UkrainianTracksuit]

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...

[tigtink]

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.

[fifal9]

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.

[kristina]

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.

[fifal9]

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.

[Simon Dog]

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.

[kristina]

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.

[iolaire]

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.

[Simon Dog]

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.

[fifal9]

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.

[iolaire]

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.

[iolaire]

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.