Survey on COVID vaccine for patients with autoimm... - PMRGCAuk

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Survey on COVID vaccine for patients with autoimmune diseases and their families

PMRpro profile image
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56 Replies

docs.google.com/forms/u/0/d...

This is a direct link to a survey set up by The French National Reference Center for Auto-Immune Diseases about the expectations and potential concerns related to the COVID vaccine for patients with autoimmune diseases and their families.

I have just completed it - very simple even if there were a couple of questions that I wasn't sure what they really meant (e.g. hindsight with regard to vaccines).

This is a link to the original post on LupusUK because there is a QR code to scan (if that floats your boat) and I'm not sure I could copy it:

healthunlocked.com/lupusuk/...

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56 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Done it

Dontwannabesick profile image
Dontwannabesick

Done

Bcol profile image
Bcol

Dunded

Koalajane profile image
Koalajane

Done it

maria40 profile image
maria40

Done it ( with reservations about what will happen to those of us with severe allergies)

HeronNS profile image
HeronNS in reply tomaria40

Do you react to other vaccines? If you do, perhaps you know what the substance is you're reacting to and can check if it's in whichever covid vaccine happens to be on offer when your turn rolls around?

in reply toHeronNS

The yearly flue vaccine is said to have an adjuvant to make the immune system more active to recognise that it needs to do something with the vaccine to make it work. Obviously these are layman terms and not a technical explanation. I am convinced that caused my first case of PMR some 6+ years ago, again early this year after my first flu vaccine for five years when I was nearly off pred. I can only report what I find. When I ask the medical professionals what causes PMR they say nobody knows.

HeronNS profile image
HeronNS in reply to

Here there is no adjuvant added. Maybe there is to the high dose one available only to those in hursing homes, but not for the general population, including old people. I only started getting the flu vaccine about three years ago, with the exception of the h1n1 year when I did my bit towards herd immunity to protect the young.

in reply toHeronNS

Thanks for info.

maria40 profile image
maria40 in reply toHeronNS

The only one of my allergies which has previously affected vaccine is latex and I -with PMRpro's invaluable help - got the name of a latex free flu jab for this year. But the penicillin reaction was not to a vaccine but to normal penicillin treatment for an infection. The two people who reacted badly to the Pfizer jab were also allergic to penicillin and the advice from NHS is that anyone who has had a severe reaction to penicillin or other medication should not have it.

Whitner profile image
Whitner in reply tomaria40

Oh Maria40 thank you for this. I too have an allergy to penicillin but not a severe one. Some of the flu vaccines also include thimerosal to which I am also allergic, but again, not a severe allergy.

Longtimer profile image
Longtimer

Just filled it in....Thank You

Frewen1 profile image
Frewen1

Done. Thank you

MamaBeagle profile image
MamaBeagle

A third of French are anti vaxers(?).And not just anti this Covid vaccine but anti all immunisation all the time. I had a conversation about this only the other day with my French friend of many when discussing the Covid vaccine. Interesting they are doing this survey.

MamaBeagle profile image
MamaBeagle

That should be my French friend of many years, we've known each other since 1965!!!

PMRCanada profile image
PMRCanada

Completed.

JGBH profile image
JGBH

Completed. Thanks.

Interestingly when I spoke with my rheumatologist on Thursday and I expressed my concerns regarding safety/efficacy of the Pfizer vaccine, he agreed that because no trials had been done on the very vulnerable category who have autoimmune diseases and are on strong immunosuppressants and steroids that it might be best for me not to have this vaccine and wait to see what other trials are done on other vaccines. So I will probably wait but I would rather have the evidence that it’s safe and effective for my category of people. Then I would not hesitate to be inoculated.

Ronnie101 profile image
Ronnie101 in reply toJGBH

I also discussed the vaccine with my rheumatologist on Friday and he said he might wait for the Oxford one, because he found it difficult to accept, as a scientist, that it could be 95% effective. HOWEVER, he urged me to have it because the balance of risk was in my favour, given my age and condition. I did find it strange he would share his concern with me though.

JGBH profile image
JGBH in reply toRonnie101

Indeed, I find those doctors who say it’s most important for people who have very compromised immunity and take steroids to be vaccinated BUT when it comes to them they hesitate! How scientific is that? Hypocrites. Actually ALL medical professionals should be vaccinated in order to protect patients or not be allowed to work without pay risking spreading the virus to patients. Don’t forget even the Oxford vaccine wouldn’t be better UNLESS it has been trialled on people who have seriously compromised immune systems, taking strong immunosuppressants and steroids. Until this has been tested the people in that category need to be cautious. It’s not an easy situation at all.

My rheumatologist didn’t say it would be best for me to have the Oxford vaccine, but wait and be careful and sensible. I would rather have the evidence it would be safe for me and I wouldn’t hesitate to be inoculated. Good luck with your decision.

PMRpro profile image
PMRproAmbassador in reply toRonnie101

But he could say that about ANY vaccine - that the protection factor is unreasonably high ...

123-go profile image
123-go

Done.

Rache profile image
Rache

Done!

herdysheep profile image
herdysheep

done

Sandradsn profile image
Sandradsn

Done

BBC News reports New corona variant, began in London, they not sure if it was brought in or mutated , not sure if vaccine will be efficacious on new variant... so just as I said yesterday, naïve to think there would not be new situations arising , and the need to make our decisions on a daily basis. This fight against these corona viruses is a marathon, not a sprint. The only race that matters is the Human Race, we will win with intelligent minute by minute decisions made as the pandemic pans out, and with aforethought to protect ourselves and each other.

PMRpro profile image
PMRproAmbassador in reply toPollynolongerinagony

Strange - the reports I read today quotes scientists saying there was no reason to assume the vaccine wouldn't work against it. Nor is there any evidence it began in London - that it is driving the increase in cases in the southeast doesn't mean it started there.

"The only race that matters is the Human Race, we will win with intelligent minute by minute decisions made as the pandemic pans out, and with aforethought to protect ourselves and each other"

Can't say I have seen a great deal of intelligence amongst the human race when it comes to Covid recently ....

Pollynolongerinagony profile image
Pollynolongerinagony in reply toPMRpro

Hello PMRpro, always lovely to receive your invaluable response. The very fact that Matt Hancock said 'its highly unlikely the new mutation will not respond to the corona virus vaccine,' indicates he can't be sure. The Scientists' report 'there is no reason to assume the vaccine wouldn't work against it, ' is currently also an assumption on their part; but of course, time will tell.

Regards the statement about the mutation being discovered in London , this was made today on Sky News by their Expert, who went on to say they were not sure if the variant was brought in, or mutated in London.

It is concerning that Chris Witty said 'there is a possibility that the vaccine's efficacy might be affected. '

Also Hancock stated 'over 1000 cases of the variant has been found in 60 local authorities in the south east and is spreading exponentially faster than the original.

Dr. Pankahania in Downing Street said today that 'the fast rate of the new variant's spread, could mean this new variant becomes the most dominant one Nationwide.' We each have to do our own research to learn what our individual safest path is, armed with as much unbiased, impartial, genuine knowledge as possible, as it unfolds each day.

It's not like you to be so despairing , with your blanket condemnation of the entire Human Race's lack of intelligence during Covid. There's quite a majority of us out here using our intelligence and common sense to stay alive in the fight against this pandemic, as seen daily on this PMR site, Members showing their incredible altruism, intelligence and compassion, in the teeth of this pandemic whilst juggling the nightmare that is PMR.

I have the greatest faith and hope for Humanity, and have found during this entire pandemic the deepest care and concern for and among ones fellow human beings. There will always be a tiny minority who have lost their way, but the vast majority of us are using our intelligence and common sense, to find a path to safety. Unbiased impartial genuine information , which helps each person make an informed decision about their safest way forward, is in all our best interest. Best wishes, Grandmother Polly.

PMRpro profile image
PMRproAmbassador in reply toPollynolongerinagony

"who went on to say they were not sure if the variant was brought in, or mutated in London"which I think is what I said.

My comment was made on the basis of the immediate reaction of the masses to being told either rules were to be relaxed a bit or that they were to be tightened in 2 days - in both cases they rushed out to shop in crowded spaces. Cue a spike in 2 weeks time. And in the UK people have been led to believe they can do as they like for 5 days over xmas - even if the scientists are warning what it may mean. In the rest of Europe they are TIGHTENING the restrictions in the hope of avoiding the 3rd wave.

No - not a lot of intelligence I fear.

Pollynolongerinagony profile image
Pollynolongerinagony in reply toPMRpro

Looking on the bright positive side of the UK's "masses'" behaviour during this horrific terrifying pandemic, of the 66,650,000 people in the UK, tragically 66,350 have lost their lives, may they R.I.P. This is one tenth of one percent of our population, so the vast vast majority of the UK 'masses ' are behaving very responsibly and are caringly protecting themselves and one another, and are to be massively applauded for their civic altruistic behaviour.... The minority of selfish idiots who are behaving irresponsibly will reap what they sew. The rest of us must guard against their wreck less behaviour undoing our responsible behaviour, especially in the face of a lily livered leadership loosening restrictions, just when they need to be most stringent. All the more reason for us common sense masses to be even more vigilant.!

Bennijax profile image
Bennijax in reply toPollynolongerinagony

The BBC news also reported the new variant has been found across European countries, not just GB

Pollynolongerinagony profile image
Pollynolongerinagony in reply toBennijax

Yes that's right. That's what made me wonder if someone had flown/driven/ trained /sailed to UK and travelled into London carrying it from across the water, and then its spreading like wildfire so quickly in this densely populated city, then possibly also, as reported , spreading exponentially across the south east, over 60 authorities as well. Maybe track n trace will discover this mutation's pathway... so we're more prepared to defend UK against the next one... incoming or home grown! keep safe, best wishes Grandmother Polly.

nuigini profile image
nuigini

Done

Lochy profile image
Lochy

Done

MrsNails profile image
MrsNails

Done ✅

Thank you

cool4bob profile image
cool4bob

Completed.

Neck680 profile image
Neck680

Done the survey. Thanks for the link

Janann25 profile image
Janann25

Done

Suzita76 profile image
Suzita76

Done, thank you

Cally55 profile image
Cally55

I took hindsight to mean lack of long term studies, we're told that most vaccines take 10 years or more. I am an extreme pro vaxer! A week in hospital with non Covid pneumonia this summer concentrated my mind wonderfully. I am tired of hiding away from the world now winter has come.

PMRpro profile image
PMRproAmbassador in reply toCally55

Possibly - but then, I get how this vaccine could be created so much faster and maybe that was my problem! It wouldn't have been the same had there not already been SARS CoV1 where basic work had been done. But above all - MONEY talks. No scientist had to beg on bended knees for funding ...

Completed

FRnina profile image
FRnina

Done.

Pixix profile image
Pixix

Completed it.

dartmoorlass profile image
dartmoorlass

Done

Snnib profile image
Snnib

Done

Bennijax profile image
Bennijax

Done. I always learn new things filling in such a survey

Whippetygirl profile image
Whippetygirl

Done.

Trident58 profile image
Trident58

Done

MrTamborine profile image
MrTamborine

Done

WillOllier profile image
WillOllier

Done thanks for posting

crafty_grannie profile image
crafty_grannie

Done, thank you

Done

daisylazy profile image
daisylazy

Done thanks

Whitner profile image
Whitner

Done! I'd love to see the results.

Oumaof2 profile image
Oumaof2

Done!

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