So glad I am reading all your posts right now.
I spent 2 weeks in Mayo recently very sick with , finally the great team of Drs. found GCA, Giant Cell Arteritis/PMR. Treated with high doses of IV steroids & Actemra which allowed me to go home on oral Prednisone. I’ve been tapering every 2 weeks & am down to 40mg as of today.
The strange symptom I’ve been having is severe hand cramping. Mostly my right hand. Never had anything like that before. I’m gratefully feeling better every day. My severe hip pain during the worst of my illness is gone. Still have some headaches but the hand thing is new. Wasn’t sure if it’s the prednisone or part of flare? This did not start until I got home from the hospital. I did notice my toes felt cramp coming on but able to stretch and prevent them from going into a painful episode. Whew!
I’m keeping a simple journal of any symptoms that come up during this tapering for my Rheumatologist appointment next week to see how the reduction in prednisone affects me. But again, not sure if it’s the withdrawal of dose in prednisone or the disease itself.
Any insight to that for those that have had this autoimmune issue? Or maybe the way prednisone raises my blood sugar? Could be affecting neuropathy type symptoms?
I’m 67, have had Lupus & Diabetes for 30 years before GCA/PMR took over the big show!