Update on GCA returns at 0.25mg

[Viveka]

When I reduced from 0.5mg to 0.25mg pred my GCA symptoms started to return - they abated for a couple of days but came back so I tried 0.5mg for 2 days, 3mg (worked first day but second day symptoms back) then 5mg for nine days. For eight days 80% symptoms gone but then they came back. Spoke with RH today and have gone up to ten - with 1mg reductions, timing based on symptoms. Could be a month, could be 2 weeks.

I thought I would share our discussion in case of it is of interest. He thought around 10 per cent of people were like me, GCA over 3 and a half years. He was pretty sure it would stop eventually. He wondered about 'the trigger'. The only thing that has happened is that I had some extremely painful IBS incidents over the last couple of months and he speculated that the bowel is very closely connected with the immune system. Also, when the mild symptoms had started I had a couple of difficult days with my partner being in hospital with enlarged prostrate. Did this exacerbate things? Rod was very clear about avoiding anxiety - which I usually do, to be honest. Was it just a perfect storm of factors? Who knows?

So, I was reconciled to being on 5 on which I feel quite well. I struggle on ten and just hope it will not be 15. Apart from that, so many of my friends have far worse things so I try not to feel sorry for myself. I think I will step back from the forum for a bit to lick my wounds, but I will return. See you later and thanks for all your help, lovely people.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear GCA has resurfaced (won’t say back, as it obviously hadn’t gone completely) -but you’ve had good common sense response from RH -as expected.

Hope you soon feel better and try avoid triggers -if you can, but as we know not always possible.

Take care 🌸

[Viveka in reply to DorsetLady]

Thanks DL, being on 5 wasn't too bad, but ten is horrible. I don't cope well when I increase and never know where it's going to end. Hoping for the best. X

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Well if you get a good reaction to 10mg - you might be able to reduce relatively quickly -fingers crossed..

But as I ‘m always saying (boring I know) -you need what you need..

[Temoral]

Hi Viveka...we have a very similar journey and I too had a 'perfect storm' event recently. Help line advised doubling my 2.5 dose to 5, which has got me through the last 5 weeks....now to contemplate a reduction...or stay with it....hmm. Keep in touch, though...we may journey onwards..just coming up to 3 years. Go steady. 🙏

[Viveka in reply to Temoral]

Hi Temoral, Yes, we started around the same time. Sorry to hear you have been having problems. Fingers crossed for us both. Yes I will keep in touch.

[PMRpro Ambassador]

Never underestimate the effect having a wobbly family member can have on the inflammation. DL and I both know all about that, And we are here if you need us - in public or a PM if that is all you can manage.

[Viveka in reply to PMRpro]

Looking after my angry nonagenarian mother for 7 years undoubtedly contributed to GCA but since she died, life is largely stress free. Oh well, I'm wishing the next few months of feeling crap over and done with. I don't know what I would have done without the forum. X

[PMRpro Ambassador in reply to Viveka]

But the change is also a stress - even when in theory it is a change for the better.