Gca Flare after 5 years ?

[Abbeys]

I was diagnosed GCA by biopsy in December 2017 and had all the classic symptoms, one was migraine aura which stopped once on 60mg. I've been tapering very slowly and got to 1 mg in September this year. Two weeks ago I had a migraine aura, my first since 2018. The only other symptom is some scalp tenderness and a mild headache that comes and goes. I went up to 5 mg, had a thorough eye exam which showed no damage to optic nerve. Is 5mg enough ? No lab results yet for crp or sed rate.Thanks for any flare or relapse advice. I was hoping I was in remission after nearly 5 years since diagnosis.

[DorsetLady PMRGCAuk volunteer]

Hi,

Possibility it's a flare, very bad luck if it is..is 5mg enough? Well that depends if it is full blown GCA, probably not ... but it's a start..

.however, you do need further investigation to find out IF it is GCA, and any new headache, whether it is or not, needs to be properly diagnosed. Please arrange to see your doctors asap, with a visit to ER if necessary... you know the risks.

This link contains advice on flares - healthunlocked.com/pmrgcauk...

Please keep us informed, and fingers crossed it not GCA..

[PMRpro Ambassador]

Is it enough? Are the symptoms gone? That is really all you can use as a guide!

[Grammy80]

I do hope you get it checked out! I have a friend, GCAer, who has been on 1mg for about 24 years. Every time she tried to draw the 1 mg away, she would have enough mild symptoms to cause her to worry. Her rheumy said..."Let's just stay there." My best...💞

[Abbeys]

Thanks for the helpful replies. To report back on my GCA flare after 5 years of very slow tapering and getting down to 1 mg. My lab results finally came in and my CRP was 3 but my sed rate, at 16 was high for me, up from 2. But my tender scalp and headache have gone after going up to 5mg. My main worry was the sudden return of migraine aura which started 5 years ago with the GCA diagnosis then went away. Oct 13 I suddenly had another which frightened me it was returning. I had 4 more but so far none since November 5 Had my eyes thoroughly checked and everything was normal. So was this most likely a flare and how long should I stay at 5 ? I had thought I was in remission after 5 years, and had felt fine at 1 mg for about 2 months.

This site has been invaluable, thank you

[DorsetLady PMRGCAuk volunteer in reply to Abbeys]

Usual advice is anything between 7-10 days -and then drop back down to just above previous dose. Have you been given any advice ? If not I wouldn’t be in too much of a rush down, maybe down to 3mg in one step, stay there a couple of weeks, and then down to 2mg or 1.5 mg provided no issues. Hold there for a long as you like -at such low doses 0.5mg can make a very big difference to controlling your GCA or not…

Good luck 🌸.

[PMRpro Ambassador in reply to Abbeys]

You can't know you are in remission until you get to zero pred and off for 6 months at least. even 1mg pred can be enough to mop up tiny amounts of inflammation due to the autoimmune part being at a very low level of activity. But you are at a really low dose - you have done well.