Those with GCA. Would you take the booster if you... - PMRGCAuk

PMRGCAuk

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Those with GCA. Would you take the booster if you had a flare with the vaccine.

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I had the Pfizer vaccine in February and March. At that time, I was on 4 mg of prednisone. One day before my second dose, I had a flare of GCA and eventually ended up on 47 mg of prednisone (I am also on Actemra). I am down to 7.5 mg of prednisone now. I can not confirm that it was the vaccine that caused my flare but I am really scared of COVID, and I am scared of another vaccine related flare. Has anyone else with GCA experienced a flare post vaccine? If so, would you take the booster?

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12 Replies
Grammy80 profile image
Grammy80

I would take it~! I have GCA and did not experience any flare with my vaccination shots....in two years of taking Prednisone the least I have managed is 10 and right now I'm coming down after another flare. I can work back down, but I'm doing everything I can not to get Covid...so I know I'd risk it. Just listen to your gut on this one; you have to be comfortable with your decision. 💖

HeronNS profile image
HeronNS

Do we know if the boosters work, or would it make more sense to wait a few months for an updated version of the vaccine which will hopefully be more effective agaisnt the variants? At the moment anyway we all should be observing physical distancing and wearing masks in public, no matter what our governments are telling us. The delta variant changed the game.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

I don't somehow think there will one of those for more than a few months and I equally suspect we may well need boosters on a fairly regular basis, maybe 2x annually. So I shall take what is on offer when it is on offer!!!

HeronNS profile image
HeronNS in reply to PMRpro

I will still feel a lot better about doing that when the rest of the world has had their vaccines and that is just the way I feel, even if it is irrational from a personal perspective. But I believe you and your partner are at more risk than I am, and I've always maintained that people who are at high risk should feel no qualms about getting a booster - if it's proven they are actually useful.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

The beta variant is a problem with the vaccines I think - and they are working on one for it. So I don't think there is a lot of point using them yet anywhere that has it as the majority. It's difficult - but distancing and travel quarantining will be important there

Rimmy profile image
Rimmy

Guess it is hard to know if the first shot actually caused the flare - but still if you think about the potential deadly impacts of actually getting Covid maybe it is still preferable to risk the 2nd - I personally would .

HeronNS profile image
HeronNS in reply to Rimmy

Exactly, as a doctor said to me, "PMR doesn't kill you". Covid can.

Ballywilliam profile image
Ballywilliam

Did your flare start a day before second vaccine ? If you were 4 weeks out from the first dose it may not have been the vaccine that caused flare ? I was diagnosed vasculitis post vaccine but my symptoms came on within 2 days - along with myopericarditis . The vaccine caused the myopericarditis and caused my underlying undiagnosed vasculitis to show itself !Being on 7.5 mg will give you some protection from vaccine reaction . My Rheumy suggested if I’m to take booster - she could give extra steroids just prior to prevent reaction ( but I’m not sure what that does to the efficacy of the booster! ) I’m holding off at moment as just need to recover from the myopericarditis first.

USAGCA profile image
USAGCA in reply to Ballywilliam

Extra steroids could indeed blunt the effect of the vaccine.

PuttyPenguin profile image
PuttyPenguin

I didn't have any problem with the original jabs but I would have a booster even if I'd had a problem as covid could be more dangerous than increasing pred. This is a personal opinion and you must go with your own gut feeling.

Carver63 profile image
Carver63

have GCA on Prednisone and Actemra. Yes i did have flares shortly after my second Pfizer vaccine. Had flare after tooth extraction surgery (implant) as well . my GCA and Prednisone ride has been bumpy over the last 15 months. tapering at 1 mg / 28 days. currently at 9. I am leery of a 3 rd vaccine and will ramp up Prednisone before the jab to help the flare. Flare have resulted in emergency hospital visits due to loss of blood pressure and decrease in heart rate.

HeronNS profile image
HeronNS

Studies appear to be showing that Moderna provides a longer lasting and more effective immune response to the delta variant.... I guess I think it's not a good plan to offer boosters to the general population of rich countries when billions of people on spaceship Earth remain completely unprotected. Latest muttering in Canada is that at some point boosters will be offered to the highest risk population - which I think so far includes, among others, ppl taking more than 20 mg pred, and perhaps people over 80. I think from your history as you've described it here you are validly in a high risk group. I am not.

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