I have had PMR since Oct 2020, undiagnosed for 10 months, at which time I started on prednisone, 15 mg, and experienced complete relief within a day or two. (As well as all the pleasure of feeling like a 25 year-old rather than a very old 68 year-old.) Now down to 6mg but feeling slightly stiffer. I want off prednisone because I fear all the negative side-effects, but I also worry about triggering a relapse so reduce by .5 mg a month or less if I become too uncomfortable.
This week, I spent several days observing my grandson’s in hospital treatment for Kawasaki syndrome, a vasculitis autoimmune disorder (not sure of the proper medical term) probably triggered by a virus and treated with IVIG. What I am wondering is if PMR (much research indicates a viral trigger) is a type of vasculitis, why isn’t IVIG one of the first lines of treatment? Is there research on this? (I cannot find any). IVIG seems so much more benign than prednisone.
I am also curious about low-dose naltrexone, which my rheumatologist here in Newfoundland, Canada, will not discuss. I have seen some positive research and several PMR sufferers in the PMR Facebook group swear by it. Opinions on this?