Stuck at 10mg

[maria40]

After a flare a couple of months ago when I'd reached 8.5 I went back up to 10mg for eight weeks and started again with a dead slow reduction - O.5 at a time - two weeks ago. Yesterday I had a return of the tingling in the back of my head which is one of my symptoms of GCA; this was so bad it woke me in the night. I've gone back up to 10mg today but I do want to get lower as I'm concerned about my cumulative dose having taken pred for 18 years now. Any suggestions welcomed.

[Celtic PMRGCAuk volunteer]

Maria, what is the lowest dose you have managed successfully over the 18 years? Are you under a rheumatologist? If not, then I think you should be, as you need some expert advice if you have continuously been having to increase back to 10mg over all these years. It sounds as though you have refractory PMR/GCA and that needs careful monitoring and treatment by an expert. Have you tried taking paracetamol for the “tingling at the back of the head” - it sort of sounds nerve-related? Others may be along with more helpful advice but, if it were me, my first port-of-call would be the rheumatologist - whereabouts are you in case we can recommend someone?

[maria40 in reply to Celtic]

Thank you Celtic. I have been down to 5mg and was there for several years until about 5 years ago. I never got lower than 4mg but was happy to have 5mg as a maintenance dose. I'm making a GP appointment to get a rheumatologist appointment though the last one I saw , over a year ago, was patronising and platitudinous. I go to a local support group and there is a concensus on the best in our area and I shall ask my GP if I can be referred to him.

[Celtic PMRGCAuk volunteer in reply to maria40]

Maria, that's great news that you have a local support group - one of the best ways to find a recommended rheumatologist from others' experience. Lots of good luck wishes.

[PMRpro Ambassador in reply to maria40]

Out of interest - where are you?

[maria40 in reply to PMRpro]

I'm in Worthing .

[PMRpro Ambassador]

At about 8mg you are taking the same amount of corticosteroid that your body makes naturally in the form of cortisol.

However - like Celtic, I'm concerned you need an expert in charge.

[maria40 in reply to PMRpro]

Thank you PMRpro. As I replied to Celtic I'm going to ask for a referral but to a specific rheumatologist who has a good local reputation for PMR/GCA as the last one I saw was a complete waste of time . I want to discuss what happens when I get to 8mg , which please God I will do, and the possibility of a synacthen test at or before that point.