GCA steroid update

[Bluey-1]

Thanks everyone for your support and advice. I continued to feel stable on the 20mg steroids, upped from 17.5mg after a flare. Tel appointment with consultant yesterday informed me that CRP results from 13/9 were reduced to 9, from 29 a fortnight ago. I will remain on 20mg for 4-6 weeks with CRP test and review in October. We are away for two nights today visiting family 100+ miles away and have a holiday booked with close friends in Europe next Wednesday which will be relaxing. What I’m finding with this condition is that I get myself in a stew about the slightest thing. The family trip may have its stressors, in both a good and potentially tense way at times (long story, I had been under stress for two years prior to diagnosis, which was after a chest infection, sore throat etc.). I think, despite my meditations, exercise, etc, I have been subconsciously stressed about these two days as I’ve not been anywhere outside our area. Sleep has been getting much better over the last week but I slept badly the last two nights and have felt drained as a result. I have plans in place for rest times during this family trip. It’s finding the balance and confidence from a mental health perspective that’s difficult. I feel I want to and need to branch out a bit. It’s felt a long few months but as my rheumatologist said yesterday, it’s early days with GCA. He was supportive about taking these breaks and reassured me that they would be helpful. Is all this whittling normal? I’ve always been a bit of a worrier anyway so it’s like trying to change my personality!

[jinasc]

Have I read your profile correctly that you have had GCA for three months and went down to 17.5mg and then a 'flare' and up to 20mg now with a review in October?

The reduction plan seems too fast from my own experience. My Rheumy reduced by no more than 10% at a time and only once a month.

Is your Rheumy going by the CRP results?

In the meantime try and relax (not easy I know) to enjoy your trip in the UK . Just remember with GCA and early days, you are all over the place, an auto-immune illness is hard to get your head around and whilst it won't kill it is lifestyle changing and you cannot ignore that fact.

BTW Where are you going in Europe?

Finally try and make time to read the FAQ section pinned on the right had side especially with regard to GCA. Knowledge is Power.

Others who had or have GCA will be along soon.

[Bluey-1 in reply to jinasc]

I think he has been going by the CRP results and my response too. I was feeling so good this week once settled down on the 20mg, even getting sleep sorted. I enjoyed short walks and gentle stretching exercises. It is early days and my emotions are all over the place. After the diagnosis I spent four weeks shocked and pleased I was alive and hadn’t lost sight. I reduced steroids no flare symptoms until the 17.5mg dose. I agree, this was far too fast and feel much happier with this longer pattern at 20mg now.

We are staying with friends in Portugal. I guess I’m moving to a stage of trying to come to terms with this condition. I have felt angry this week, about losing the ‘me’ I usually am and maybe my nervousness is seeing family for the first time. I’ve noticed some people ‘get’ this but many don’t. That is difficult.

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

“I’ve noticed some people ‘get’ this but many don’t. That is difficult.”

Suggest you print off my info post (just the post not all the replies) and if your friends are interested and ask about GCA, then show them….

Or just say you have a chronic illness which means you may look the same on the outside, but because of the nature of the illness your body struggles to do what you want it to….and you are likely to get exhausted …not just tired, but really exhausted…

[PMRpro Ambassador in reply to Bluey-1]

Maybe have a copy of the Spoons theory too.

[Sharitone]

I think your reaction is entirely normal. It is the hardest thing to believe you have this thing which is so alien to your self-image. As you are staying with friends I imagine it will be a lovely break; if you have plenty of pred with you, there's not much that can go wrong. Just make sure that your friends do 'get it' and understand that you might not be able to walk very much. I hope you have lots of good weather for sitting around and resting in!

[Viveka]

I'd be amazed if there is anyone on this site who is not an overly conscientious worrier. It goes with the territory, I'm afraid. The 'don't give a damns' get something else. Anyway, it is great you feel good on 20 and now with a realistic taper things should go a lot better. Did for me after a too fast taper. As everyone says, take it easy, build rest in and be kind to yourself. The pred makes you feel ok, but also, I find, up and down.