Contracting GCA after being vaccinated: Î’m new to... - PMRGCAuk

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Contracting GCA after being vaccinated

Shanghi profile image
46 Replies

Î’m new to this site & happy to have discovered it. I would like to know if there is a link, or data on people who contracted GCA after their Astra Zeneca jab or the other vaccines.

I ´m aware of the Yellow card scheme data.

I got GCA after my first AZ jab, but here in Canada, doctors are very reluctant to acknowledge that, nor is it documented anywhere.

I would appreciate any info. Thank you🙂

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Shanghi profile image
Shanghi
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46 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Welcome….as I said in PM doubt there’s much documented evidence as yet……but you may get some others in similar situation.

Very often the GCA is lurking around, and you’ll find the Covid vaccine (or flu vaccine, or shingles vaccine [where there is anecdotal evidence]) is the last straw that breaks the camels back.

Seacat30 profile image
Seacat30

My first PMR symptom appeared 5 days after my first Astrazeneca vaccine. That is all I can say on the matter. I know of an 81 year old local man in a similar situation.

Alchemy8 profile image
Alchemy8 in reply to Seacat30

Same has recently happened to a friend after the injection. Healthy lady in her 70's. One day she was up and about and the next she was immobile.

PMRpro profile image
PMRproAmbassador

There will be no data yet as it takes time to collect information.

It is perfectly possible the vaccine triggered the immune system to go haywire - but there is no single cause of the immune system developing the fault that causes it to be unable to recognise your body as self and so it attacks it as an invader, like it would in an infection. It is thought to be an accumulation of insults to the immune system over your lifetime - it may be environmental, chemical, illness, infection, surgery, emotional or physical stress and eventually a straw breaks the camel's back and an autoimmune problem develops. What label you get depends on the symptoms. If it hadn't been the Covid vaccine, it might have been Covid itself, or a flu vaccine, or flu itself, or a bereavement, stress at work - any one of a whole range of things.

Quite a few of us have had flares of both GCA and PMR - but it has been noted that Long Covid has a lot of features of vasculitis and PMR.

Seacat30 profile image
Seacat30 in reply to PMRpro

I had a little read in the threads recommended to me and by searching. It didn't just seem to be Astrazeneca. I think I saw mention of Pziser and Moderna too. Is that correct?

PMRpro profile image
PMRproAmbassador in reply to Seacat30

I've had a flare after the Moderna vaccine and there are others who had the Pfizer vaccine - but if you read what I wrote, you will see it can happen after the flu and shingles vaccines as well as a whole range of other events. You can't just link it to the COVID vaccine - it is the state of the immune system that is key.

Seacat30 profile image
Seacat30 in reply to PMRpro

I listened to what you told me a couple of weeks ago but in the context of this question it seemed fair to point out that it wasn't just AstraZeneca.

PMRpro profile image
PMRproAmbassador in reply to Seacat30

And what I'm ponting out is that it isn't just Covid vaccines - it can happen with other vaccines as well as a whole range of other things.

Shanghi profile image
Shanghi in reply to Seacat30

Yes, on the GCA fb support group, there were people who got GCA after Pfizer & Moderna. I checked the Yellow Card Scheme & it showed to-date 50 cases of GCA.

Seacat30 profile image
Seacat30 in reply to Shanghi

Interesting. My GP said that she would report my PMR but I suspect that she didn't based on her failure to do other things that she promised. (I think she is snowed under with work.)

PMRpro profile image
PMRproAmbassador in reply to Seacat30

If you are in the UK you can report it yourself.

Seacat30 profile image
Seacat30 in reply to PMRpro

I didn't want to double up if the GP had reported it but have just done a report because her last words to me implied that she hadn't.

SnazzyD profile image
SnazzyD in reply to Seacat30

That doesn’t matter, it doesn’t work like that. It’s not like they get a report back of who submitted, it goes into the abyss.

Bachfugue profile image
Bachfugue in reply to PMRpro

How do we go about this?

AyJayBass profile image
AyJayBass in reply to Bachfugue

yellowcard.mhra.gov.uk/

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to AyJayBass

Just beat me to it!

PMRpro profile image
PMRproAmbassador in reply to Bachfugue

yellowcard.mhra.gov.uk/

In the USA it is an FDA site I think

peanutann profile image
peanutann in reply to Shanghi

I didn’t even know there was a GCA Facebook group. Thanks fir the info. I got first symptom of GCA FIVE DAYS after my second Moderna shot.

Alchemy8 profile image
Alchemy8 in reply to Shanghi

And so few people are reporting so that is by no means the full number.

Reader7 profile image
Reader7 in reply to PMRpro

Such an interesting thread. Is there any data on those with GCA and PMR who have contracted the Covid virus?

PMRpro profile image
PMRproAmbassador in reply to Reader7

Not yet - patience. Collecting data like that will take a lot of time.

bussell profile image
bussell

Just to add in my five cents worth, my polymyalgia symptoms appeared immediately after the first Pfizer vaccination, so not just Astra Zeneca involved. But as PMRpro has said, it was likely just the last straw, and the next bit of stress/insult/whatever you like to call it, would have also tipped the balance. With hindsight I can see that problems were building up. I had persistent shoulder and neck trouble which I put down to new puppy pulling at the lead, hip tendinopathy which seemed to have no cause, etc etc. Probably all warnings of what was to hit like an avalanche later. On a brighter note, 6 months on, have just come in from a happy couple of hours cutting the grass, planting clematis, weeding, watering. Activities i could not have contemplated a few months ago. Life does go on....

ChrisinNam profile image
ChrisinNam

If it helps at all, I got the first symptoms, very clear symptoms, of PMR last September, and a week later got my flu vaccination. I had no adverse reaction to that, nor to the AstraZenica vaccinations in January and April. I THINK it's just coincidence.

Bachfugue profile image
Bachfugue

Yes there does seem to be a relationship here.

I had a flare starting about three weeks after my first AZ jab from a PMR baseline of taking 5mg pred two years from the initial diagnosis. I was experiencing possible signs of GCA - some double vision, scalp and temple sensitivity with an increase in PMR pain and feeling generally unwell. Saw the consultant within a few days - no increased inflammation markers. Had a 120mg prednisolone jab and increased dose to 8mg. All settled down very quickly remaining on 8mg for two months tapering to 7mg but pain beginning a tad, so back to 8mg and all well thus far.

Viveka profile image
Viveka

In February I had 13 migraines, when I would usually expect 4 a month in the winter. Most were not like my usual migraines, they were low level but diffuse headaches. I thought they were rebound headaches from too many over the counter painkillers. Two days after my AZ vaccine at the end of Feb my temporal arteries became enlarged and slightly sore. Two days later after raised ESR 59 and slightly high CRP I was on 40mg pred. After my second AZ vaccine I developed PMR symptoms (on 20mg) mainly disappeared within 24 hours - still get the odd twinge. I agree with consensus on this forum - there is no causal link, but vaccine accelerated a process that was underway and probably, but not certainly, would have emerged anyway. Although I am generally a relaxed person who practices yoga and meditation, new challenging caring responsibilities radically increased stress over the last five years and I am sure the negativity of this was a factor. The more I think about booster jabs, the more I am wary of what might happen next.

One consultant said he didn't think I had GCA, another said I had "some degree" of it. The raised TAs went in two days, but throughout I have continued to get regular low level head symptoms which caused confusion. I think the general consensus now is that history of migraine and sensitivity to pred are likely to be the culprits. The advice is to go by blood markers to inform tapering. I am watching and waiting.

For a bit of hope, last consultant I saw thought that GCA that came on quickly in this way may possibly be more likely to go more quickly - no guarantees of course, just his feeling. (He is well regarded by the forum).

Seacat30 profile image
Seacat30

Having had 2 x Astrazeneca my main interest would be in whether I should try to steer for any particular vaccine to escape without having a flare when we are offered the planned 3rd booster but I can't really see a clear pattern.

SnazzyD profile image
SnazzyD in reply to Seacat30

I’ve given thousands of different vaccines to different ages and know that in some they cause bad effects, full stop. These vaccines will be no different and it is quite possible there is no one that is worse than the others in terms of adverse events, because at an individual level it’s too complicated. However, I am not encouraged by the apparent bias kicking in with docs deciding when someone’s symptoms are due to it or not, thus influencing whether it is reported or not and/or how it is presented. This tampers with data and the science is degraded by loss of that data and the opportunity to improve the vaccine experience and safety . It has been the case for vaccines forever and I’ve seen countless smoking guns being discounted over the years. I do hope sense prevails and all docs see this as an unprecedented opportunity to do some proper science with massive numbers and that they should not act as the filter.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

I know a lot of doctors dismiss patients wanting to report an adverse event because "It's a known side effect" - but it is only the figures from post-marketing monitoring that provide the REAL figures for those events when in use in every day life. Because that is a very different situation from sanitised clinical trials on carefully selected subjects - above all, because they are mostly healthy!!!!

Seacat30 profile image
Seacat30 in reply to SnazzyD

I think they could have been put under pressure to discount any potential Covid vaccine involvement in triggering anything (beyond the things that the Europeans got investigated) so as to get the vaccination numbers up and open up the UK economy.

Shanghi profile image
Shanghi in reply to Seacat30

This is definitely the case here in Canada..

Seacat30 profile image
Seacat30 in reply to Shanghi

How did you find out how many GCA cases had been reported on the yellow card site? I was trying for PMR and couldn't work out how to do it. Maybe because I am in the UK?

Shanghi profile image
Shanghi in reply to Seacat30

assets.publishing.service.g...

scroll thru’ on pg. 113, Arteritis (1) & GCA (49)

Seacat30 profile image
Seacat30 in reply to Shanghi

Thanks. Used search facility at top of page. Polymyalgia Rheumatica is on page 63 with only 64 reports.

readingbooks profile image
readingbooks in reply to Shanghi

Not my experience.

Alchemy8 profile image
Alchemy8 in reply to SnazzyD

Absolutely agree! Where is the science here? We only heard about the side effects because so many people have reported them. And they have been pretty strong - and strange.

flecanide profile image
flecanide

Never had PMR and volunteered for Johnson and Johnson - developed PMR shortly thereafter. Doing the prednisone regime now. My physician told me that it was not Johnson and Johnson, just simply my immune response to what could have been any vaccine or virus.I guess in another generation or so we will have designer drugs (vaccines ec) that are based on our DNA. Afterall PMR etc. is all DNA related I believe.

SnazzyD profile image
SnazzyD in reply to flecanide

They could be right. If the immune system is necessarily treated like kicking an ants’ nest to get it looking for the particles, some people will react in a disorderly fashion.

Exflex profile image
Exflex

If it’s a choice between the side effects of vaccination and those of Covid, I know which I would choose. I’m on 7.5mg of Pred from an initial dose of 15mg in response to a PMR diagnosis 18 months ago (if I’d followed the rheumatologist’s guidance I would have been off steroids at the end of the 1st year). My inflammation markers are still significantly out of range, and if I allow myself I can worry about the onset of GCA (statistically 1 in 20, I‘ve read).

PMRZ profile image
PMRZ

I joined this group because my partner developed extreme PMR pain after the AZ vaccination and was rushed to A&E. However, as people have said, he did have some low-level symptoms of it before but it was never diagnosed. I had a theory that because AZ has a live virus that might have been the trigger. But reading some of the posts recently, it appears to have happened with any vaccine. Ironically enough, we booked his second vaccine last Monday and on Tuesday he had an extreme flare where he couldn’t walk and slept on the floor for two days. If he has HAD the vaccine instead of booking the vaccine we would have reached a different conclusion!

Shanghi profile image
Shanghi

An interesting article on vasculitis and the spike proteins in the Covid vaccines

drmalcolmkendrick.org/2021/...

Alchemy8 profile image
Alchemy8 in reply to Shanghi

Wow - thanks for this - disturbing.

pugrescue profile image
pugrescue

I agree with the theory that any vaccine could trigger the immune system, as that is how they actually work. As several have mentioned, you probably have the beginnings of GCA, and it can put you over the edge so to speak. I was dx with GCA March/19, tapered off pred Nov/20. Been having a few twinges, but nothing serious. A few hrs after my second Pfizer vacc (first, no reaction) I thought I had full blown GCA once more. Did not go to Dr as have pred here if needed. The headaches got a bit better w/o treatment and pretty much back to normal in about 5 days. HOWEVER I now have vitiligo. Have an in-house appt with rheumy on Wednesday, as my GP was pretty alarmed about it all. BTW also have a huge bruise from the second, no accounting from what.... I think everyone should have the 2 shots, as any side effects are less than Covid itself. But it might be helpful to know what side effects or reactions we could expect when we already have or had an autoimmune disorder. JMO

PMRpro profile image
PMRproAmbassador in reply to pugrescue

Bear in mind it is WE who are providing that evidence!!!

Shanghi profile image
Shanghi in reply to pugrescue

Sorry to hear that you have now contracted vitiligo, an autoimmune disease. When I read your post, I started wondering if there is a link between GCA & vitiligo.I have had vitiligo for over 30 yrs. & this yr. got GCA after 1st dose of AZ vax.

Scientists Implicate Gene in Vitiligo and Other Autoimmune Diseases

nih.gov

Curious to know whether there has been more research into this, because both conditions have unknown causes, except in the above research vitiligo is linked to a gene.

nallufl24 profile image
nallufl24

I started to get GCA symptoms after I received the Pfizer vaccine. Who knows if it’s related. When I asked different doctors, they said probably not but I think they don’t know any more than I do about it.

PMRpro profile image
PMRproAmbassador in reply to nallufl24

Could well be - but it could have been the flu vaccine when you get round to it, or anything else that was the final straw ...

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