Would it be unwise to volunteer for Covid vaccine... - PMRGCAuk

PMRGCAuk

20,295 members38,022 posts

Would it be unwise to volunteer for Covid vaccine study if you have PMR?

artfingers profile image
20 Replies

I'm just wondering, I assume it would be very unwise to volunteer to be part of the Covid vaccine study if you have PMR? Asking for a friend (ha ha) no, honestly, I have been wondering if this is something I could or should or shouldn't investigate doing. I've had PMR for roughly 5 years and take 5 mg prednisone daily and live in Michigan, U.S. Has anyone with PMR volunteered for this?

Written by
artfingers profile image
artfingers
To view profiles and participate in discussions please or .
Read more about...
20 Replies
MrsNails profile image
MrsNails

Personally, l wouldn’t under any circumstances....

They are only taking young, fit adults in the UK - under 40years old l think, but l’ll check.....

I stand corrected, they are looking for Volunteers of all ages in the UK, see below -

gov.uk/government/news/1000...

piglette profile image
piglette

I am sure they would tell you if you are suitable or not.

PMRpro profile image
PMRproAmbassador

Depends which bit - they are seeking subjects to get the vaccine and then be exposed to the virus to speed that first stage up, it is one of the longest bits contributing to the delays. I wouldn't choose to do that!

But some stages are open to pretty much everyone and they have said at one point they need vulnerable groups too. No point developing a vaccine that doesn't work for the groups most at risk or which poses a risk for them and that has been a criticism of the new shingles vaccine for example.

SnazzyD profile image
SnazzyD

Nothing would induce me, for experimental reasons rather than safety, to take in substances that are designed to make the immune system go on the high alert. My autoimmune condition does that quite enough as it is. Not being quite healthy would also make me wary of being infected just in case I then get Covid anyway, already at a disadvantage.

fmkkm profile image
fmkkm

Gather all the data and do a risk/benefit analysis.

S4ndy profile image
S4ndy

I don't think I would want to be a volunteer. It's not without risk in healthy people so for us with our malfunctioning immune system it may cause problems.

I once had a friend who was paralysed with Guillain-Barre syndrome following a flu vaccination in her late 60s. It took a few years before she could function normally again. She believes that it was because she had inflammatory arthritis and was taking dmards at the time of the vaccine and it sent her immune system into overdrive.

I also nursed another gentleman who was diagnosed with Gillain-Barre following a vaccination. Unfortunately he never recovered and eventually died of pneumonia. He was older but had no pre-existing conditions.

I understand that some of the covid 19 vaccine test subjects have reacted and become ill and that one person has died. This is from the vaccine being tested which was developed by Astra Zenica and Oxford University.

I think at this early stage of testing it would be too much of a risk to volunteer as a test subjects. That is my own opinion and I fully respect people may have a different view. I think it's still going to be a long time before we get a safe effective vaccine for this coronavirus.

MamaBeagle profile image
MamaBeagle in reply to S4ndy

If you're thinking of the guy in Brazil who died, he didn't die from the vaccine. He was a volunteer on the trial and a frontline doctor. He hadn't had any of the vaccine but did contract Covid and died from the virus. Only 28yrs old. Very sad.

S4ndy profile image
S4ndy in reply to MamaBeagle

That's sad but it's not the man I am referring to. It was a few weeks ago and the trial was halted for a while. Not sure if the test subjects concerned were in the UK or USA. Wish I had kept the link as I can't find it now :( It was by a scientific journal and they were writing about how this would delay that particular vaccine going into more widespread trials.

PMRpro profile image
PMRproAmbassador in reply to S4ndy

It has been reported this morning that the trials are to resume as the investigation has decided that the illness was not directly attributable to the Covid vaccine.

It happens with the trials of all pharmaceuticals. If a trial subject develops a serious illness or dies the trial stops (only recruiting in the case of a vaccine which obviously can't be stopped once it is given) until the situation has been clarified. Mostly you won't hear about it but this is front page news.

S4ndy profile image
S4ndy in reply to PMRpro

Thanks for clarifying this. Anything to do with this particular virus seems to be making front page news. Guess the press grabs onto any small thing to spread fear and panic.

I still have my doubts whether they will find a safe and effective vaccine for this coronavirus in the very near future. Maybe give it another year of research and trials and they might get something useable. Coronaviruses are tricksy little mutating beggars :)

PMRpro profile image
PMRproAmbassador in reply to S4ndy

This one hasn't been mutating a lot and some of the vaccines are based on different technology which should work round the mutation aspect. However - the vaccine won't remove Covid dangers until there is a high enough uptake to break the line of transmission and there are enough naysayers to make that difficult. It will be an ongoing problem, probably for years.

Suffererc profile image
Suffererc

You are very brave to even consider it.

Jan_Noack profile image
Jan_Noack

NO way would I volunteer... leant the heard way with drugs that haven't been tested enough. If you are vulnerable ..that does mean you are likely to get COVID more easily, ie at a lower dose than most others and probably more severely..ie with a significantly higher chance of death or ongoing organ/immune system damage that the 30-40 yr old healthy person. They are now, at least, at the stage where they need to test against that healthy group first to see if it kills them, creates lifelong organ damage or immune problems, or they get over it..and then did it provide any immunity and for how long...

I do not think I'd volunteer even f I was in that healthy group either BTW.(maybe I am being selfish but I've just had enough I think). Actually I do not agree with this using volunteers. It is like asking for volunteers to do behind enemy lines missions maybe in a war..but at least in that case you can sometimes use your wits. Maybe they should request all people who are trying to commit suicide to volunteer instead? .but they probably are exempt by some questionnaire.

I do hope the volunteers will all be OK.

artfingers profile image
artfingers

Thanks all for your input. I appreciate it!

yogabonnie profile image
yogabonnie

Did you do it? I applaud you. I hadn't even thought of it. I had H191 last year while on maybe 8 dont remember for certain of prednisone and I had had a flu shot... and it wasn't so bad. Hoping that is how covid might go. they dont know enough about how we will react. Let us know. What is your reasoning behind wanting perhaps to do it? Just for the good of mankind? You are much better than I. although I did volunteer to be a bone marrow donor and I was TOO OLD! I was shocked. !!

artfingers profile image
artfingers in reply to yogabonnie

Thanks for asking, no, so far, I have not. I do volunteer for other health studies but I am still pondering it. Most likely I will not. I did happen to volunteer for an Alzheimer's study which included a free PET scan, battery of tests, etc. and was very pleased they didn't find any plaque in my brain. That eased my mind greatly (tho it isn't a free pass) so sometimes it is worth it - this Covid is so dangerous, I'm reluctant to chance it.

yogabonnie profile image
yogabonnie

You inspired me and they are asking for volunteers in my city too just came on the tv so I filled out the screening and was rejected after I answered yes to prednisone use

yogabonnie profile image
yogabonnie

It was the ixford and AstraZeneca study phase 3

HeronNS profile image
HeronNS in reply to yogabonnie

Interesting screening. I know they said at the beginning that the elderly would be included eventually in trials as the vaccine is most needed by that group. But I guess it's good to take only the healthiest elderly until they see how the immune system responds. We will have plenty of time to see what happens in the real world as I think it will first be offered to front line health care workers, then residents of long term care homes, and only then to older members of the general public. Of course the Olympic athletes and their support teams, which might include older adults too, will all get the covid vaccine!

artfingers profile image
artfingers

Yes, I too tried to sign up and was rejected when it got to asking if I had an auto-immune disease. Oh well, I did try. Hopefully they'll have a vaccine in Spring.

You may also like...

Paxlovid for Covid if you have PMR

hi all. Living in France for 5 months didn’t think I would get Covid here but I did. I think it came

Covid vaccination and onset of PMR

appointment for my second shot of the Pfizer vaccine for 27th Feb. Very pleased but a bit...

PMR and new COVID mNRA vaccine

off prednisone in March 2021 when I received the second of two initial (Moderna) vaccines. PMR...

PMR and Covid vaccine experience

Having had my second covid vaccination 5 days ago I am finding my PMR symptoms are heightened. I

PMR after Covid vaccine?

their Covid vaccine may have triggered PMR? If so, what advice have you received about further...