Does GCA ever go away or just into remission?

[Cobalt2sister]

hi. I have GCA but off prednisone since end of June. No flares since. Is GCA gone or once you have it you always have it and I've just been lucky to have no flares so far? Is it something I always need to be little alert to? Thanks for any thoughts you might have. I read here daily and so appreciate the important work of this site.

[DorsetLady PMRGCAuk volunteer]

I had GCA - and came off Pred in September 2016…. No sign since… although I always class myself as in remission…. But as I’ve had 3 replacement surgeries which could have triggered it had it still been “there” they haven’t.

[Cobalt2sister in reply to DorsetLady]

Thank you Dorset Lady. That's amazing. So glad for you. I appreciate your reply.

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

Initially after Pred I probably did “think” about GCA -but TBH life moves on and so do you..even though mine left me with something I’d rather not have. But it is what it is.

Maybe be mindful, but don’t let it consume too much of your time…

[PMRpro Ambassador]

The use of the term remission rather than cure is used because the propensity for the immune system to go haywire again remains - just as it was there before the GCA actually happened in response to some unknown trigger. It might be a repeat of the same trigger or it may be in response to another one.

[Gottarelax]

Two family members kicked GCA with prednisolone and then had it reoccur a around 3-5 years later...so I think that remission is probably more accurate.

[PMRpro Ambassador in reply to Gottarelax]

"Two family members kicked GCA with prednisolone"

If only - NOTHING "kicks" GCA, the underlying autoimmune cause runs its course and gets bored, burns out and you can get off pred which was only a management strategy anyway, It has no effect on the disease process. Bad luck though - less common for GCA to recur, although it does as you know.

[Gottarelax in reply to PMRpro]

Yeah, not really the right turn of phrase - survived is probably more accurate. As for the familial recurrence, it does make me cautious of every headache!

[DorsetLady PMRGCAuk volunteer in reply to Gottarelax]

“Recovered” is better! 😊

[prunus]

I had GCA in 2012. Since then I have had three relapses. The consequence is I'm now permanently on a small daily dose of predisolone. Hope you do better than I and manage to stay in remission.

[Cobalt2sister in reply to prunus]

So sorry for all you've been dealing with.hope maintenance dose of pres keeps you safe. Sorry for delay in responding...( Covid kept me out of commission.

[TheMoaningViolet]

I "only" had PMR symptoms and they have not resurfaced during the last two years of tapering steroids, but I think of it as a warning to pay attention to my body and do everything I can to keep it well. PMR is not the only autoimmune condition and some might say all autoimmune diseases are different expressions of the same underlying problem. The mysterious connection between GCA and PMR is an apt example.

[Cobalt2sister in reply to TheMoaningViolet]

Thanks, very interesting. Sorry to be so long in responding. Out with Covid ( third time!)

[TheMoaningViolet in reply to Cobalt2sister]

Sorry to hear that. x

[MiniSpec]

I started on 15mgs of Pred per day due to PMR but I developed GCA when I tapered my dosage from 11mgs to 10mgs per day. This was quickly contained with 60mgs per day of Pred, and then I reduced down to 20mgs in about two months. About 18 months later I managed to get down to 11mgs a day once more and was very dubious about reducing any more, so took it very very slowly. This time I managed to get to 10mgs without problem, but when I tried to reduce to 9mgs the GCA came back again. This time it took 50mgs per day to contain it.

That was about 10 years ago, and I haven't had any further GCA symptoms, even though I'm now on 3mgs per day of Pred. However, I'm always wary of headaches even now, and if it happened to be the case that a painkiller didn't have any affect on a headache then I'd be straight to A&E before it could develop any further. So far though, that hasn't happened, but I'm always a little worried, just in case, as I don't believe it ever truly goes away.

[Cobalt2sister in reply to MiniSpec]

Thanks for sharing your experience and thoughts. Sorry didn't get back to you earlier but out of commission with Covid then covid rebound! Take card