I have been in remission with my GCA. I’m off Prednisone and just doing weekly injections of Actemra. I recently had the scalp pain that’s been gone for some time. Has anyone experienced this? The ER doctor put me on 50 mg Prednisone for 5 days and pain went away.
GCA//Actemra: I have been in remission with my GCA... - PMRGCAuk
GCA//Actemra
Have replied to your other post - but you’ll have to wait for Europe to wake up to get more replies -I’m in NZ at present .
Are you saying pain has now returned?
I replied to your other version of this post too but a bit differently. If your symptoms have resolved on 50mg it points to an inflammatory cause, this could be GCA. If it is an infection, say shingles or bacterial, it could help with temporary suppression of symptoms. If you’ve had a 50mg trial and it is coming back, it suggests someone needs to decide what is going on and treat it. If that is GCA it sounds like you need Pred now.
Actemra only totally replaces pred in GCA for half of patients. This is due to the fact there are at least 3 different underlying mechanisms for the inflammation found in GCA and Actemra, as a biologic, is extremely specific and only works for one of them, the one involving the IL-6 cytokine. If the others are involving the other mechanisms, you will need some pred to manage the inflammation due to them Commonly, patients in the trials were able to get down to 8-10mg, sometimes lower, before getting stuck. Some doctors seem blissfully unaware of this fact though it was very clear from the clinical trials that for half of patients the inflammation was incompletely controlled.
You presumably tapered that last 10mg very quickly? You may need to go back to 10mg and taper more slowly to see where the inflammation is no longer controlled by the pred dose.
Thank you for your reply. I was taking Actemra every other week and now back to once a week and no more scalp tenderness. I will get a MRA on my head next week to check out all my arteries and blood vessels to make sure everything is ok.
I inject with 15mg of methotrexate and take 7mg of pred . I in times if stress I find my scalp tender and my temples feel the same .my biggest issue with GCA is my jaw .