After 18 months on Prednisolone, reduced from initial 60mg daily ( the almost lethal dose in my case), I was down to 2 mg daily and my inflammatory factors (ESR and C-reactive protein) were very low. Then suddenly in September this year, a routine blood test shocked my medics ( and me)- both ESR and C-reactive protein very high ( 6 times higher than when they first suspected GCA), yet I had no symptoms. In case it is/ was a flare/ relapse, my steroids had to be increased again (only to 10mg, but this is enough to bring on all the nasty side effects again- suicidal thoughts, no sleep, hair falling out, hamster cheeks, and of course, I am now pre-diabetic ). However, with no GCA symptoms, it is more likely that this new inflammation is due to something else ( an infection or a tumour somewhere), so I’m being “investigated” fast... PET-CT scan next week. In some ways, it’s good to get these factors checked frequently, but never having had temporal artery biopsy, and no visual problems, in fact no problems at all since the initial head and jaw ache, it’s not entirely certain I had GCA in the first place!
Hey ho.