Diagnosed with GCA about 5 months ago. GP's put me onto 50mg Pred straight away. All the symptoms, headaches, temporal artery, scalp tenderness, jaw claudication and night sweats disappeared within days. Brilliant. Still exhausted, but by pacing myself and taking suitable naps I was all good, still managing to function and work. Blood tests were very high at outset, I didn't take much notice, (I figured this was for the GP not for me to interpret), I think it was a CRP test, but not sure, something like a reading of 50 (I recall it being about 10 times normal), then dropped to lets say 25, I was told about 5 times normal after 2 months. Recent test still at same level. Again, I was feeling fine, so didn't take a lot of notice, but I did ask for a referral to a specialist at this stage, (still waiting on this) as both the GP and me felt that we should have seen another drop, if not return to near normal.
So all in all, coping and managing, just happy to know what was wrong and still being able to manage a pretty good (actually very good) life living with the illness.
BUT; for the last 10 days I have been having pains in the legs, buttocks and back, making walking difficult. This has got more and more severe, but mainly only in the one leg and mainly in the top of the calf and base of thigh. Night sweats have reappeared. Now in bad pain and total exhaustion, cant manage much at all.
I read that 40 to 50% of people with GCA can also go on to have PMR. Is this what is happening to me? I am in discussion with the GP's (I never seem to be able to see the same one) about this and whether perhaps this is a sign that the original dose of 50 wasn't quite high enough. They don't seem to know and even they are struggling to get any specialist to either see me or give them a direct answer.
So can these additional, possibly PMR symptoms, appear along the way? Is this a sort of flare? Anybody else had this happen?