I wish I could honestly claim to be a new member of "Club Zero" but it would be false news because even though I no longer take my favorite drug, prednisone, as the dose that I was dxed to stay on(2.5mgs)for a month before was not controlling any of my symptoms. I am much worse than I've ever been, so I went up to 15mgs for a week but noticed no improvement.
I have migratory joint pain, wake up as if coming out of a coma after being run over, big time ADD, but worst of all, muscle fatigability that makes it very scary to walk as my knees start buckling and my dexa scan says I have a high risk breaking my hip.
Desperation has forced me to break a promise I made to myself to never ask my OH to get me in to see a colleague at the hospital where he worked. I remembered he had a fellow Neurologist who specialized in neuro muscular disorders and was known to be a kind of Dr. House. This doctor really listened to me, made me walk, do a squat, get up from a chair and sit up from a lying position, etc... He did the whole complete neurological thing they do.. He then ordered blood test and a muscle biopsy (maybe, pending on the test results)
I'm not sure if I ever had PMR, my OH and the rheumi, whom I had never seen before, diagnosed me with PMR in the waiting area.. He said I was too young (65) to have PMR (haha) and wrote "probable PMR". From then, I decided to go the regular public health route, saw a GP for the first time in my life and got prescription for prednisone automated and was basically alone with my PMR as I awaited my first official appointment with the Rheumatologist that took 4 months. Thanks to PMRpro (Eileen, back then) and all the aunties and uncles, I was able to understand the basics - diet, supplements, exercise, traveling, etc. When I finally saw the new Rheumi, I probably knew more about PMR than he did! 😕😬
Maybe I did have PMR and it has gone into remission thanks to Actemra which really did cure all my symptoms for a while and brought my CRP down to normal for the first time in years. I am still on Actemra as Dr. House told me to stay on it till we know for sure. The muscle biopsy is to rule out something quite scary called Inclusion Body Myositis. I think my dentist was right when he said he thought I had Sjögren’s, I will soon find out.
I have been freaking out lately, visiting all sorts of groups on Facebook.. Sling the Mesh, Sjogrens, IBM,..
None of them compare to this group.. It's like comparing a 5 star hotel to a motel.. There is no other community like this one, so warm, intimate and informative. So many beautiful, clever writers, too.
I hope I am still eligible to be a part of this community that has taught me so much (even English) at least until I find out for sure if I had PMR.. I may never know!