Does GCA Recur ?

[Abbeys]

Hello .I was diagnosed in December 2017 with GCA with a positive biopsy.

After taking Prednisone only, and a few minor flares, I have slowly tapered down and as of June 29th 2023 am now off of the steroids.

My question is, does GCA return, and if so, at what percentage?

Thank you so very much for this site. It has been invaluable and helped me more then my rheumatologist by far

[PMRpro Ambassador]

It can recur but I have no idea what sort of percentage it is - just that it is rare and I think I only have heard of a couple of cases on the forums in more than 10 years. PMR is much more likely to relapse.

[PMRpro Ambassador in reply to PMRpro]

One of the problems for searching for such a figure is that doctors talk about relapses - and include when patient's symptoms return during a taper, The main cause of THAT is a reduction in dose that is too fast or too great at one time. Many doctors fail to understand that just because the symptoms go away with high dose pred, it hasn't cured it, steroids are a management strategy and must be continued at a high enough dose to suppress the ongoing inflammation. So trying to find a figure for recurrences after the patient has successfully achieved zero pred for more than 6 months is next to impossible.

[Abbeys in reply to PMRpro]

Thank you. I am hopeful then, that a recurrence is not common.

[DorsetLady PMRGCAuk volunteer]

Not sure a percentage is known -but rarer than PMR reoccurring.

My feeling is that those who do have a reoccurrence may well have been reduced too quickly first time around, so it may not have run it’s course. . But that’s my opinion only.

Me -in remission for almost 7 years -and like you, mine lasted around 6 years - being undiagnosed for the first 18 months.

[Abbeys in reply to DorsetLady]

I feel reassured that this may actually be the end of my GCA journey. Thank you for your kind reply. This forum has been amazing and so helpful. Good luck to those still on their journey.

[Hidden]

I was diagnosed with Temporal GCA in 2015,remission in 2021. Eleven months later I was diagnosed with GCA in the Aorta.

[Missus835 in reply to Hidden]

I'm sorry you're going thru this lindanna. It sounds very serious and must be extremely difficult. Cheers to a complete remission . Hugs to you.

[prunus]

I've had GCA for almost eleven years and have had three relapses. At the moment I'm on 3mg of predisolone and feel well. I'm trying to get down to two and a half mgs but after three relapses wonder if I'll ever get off predisolone. Think it might be more what is the lowest dose that works.

[Pippah45 in reply to prunus]

Have you tried doing .25 of a reduction? I got stuck at 7 pred for a very long time until I dropped by a quarter of a tab. Now down to 5 and about to take a deep breath and go to 4.75!

[prunus in reply to Pippah45]

I get down all right and off, then about eighteen months later it starts again.. Thanks for the suggestion.