Hello Everyone
I haven't posted for a long time butI keep in touch daily. Thought my story might be helpful as even though on a very gradual taper I am encountering side effects. I was diagnosed with PMR January 2015. I have been very lucky as never had pain. Stiffness was dehabilitating enough. I resisted steroids for 5 months. The practices I put into place in that period though have helped me along the way. Once on steroids stiffness disappeared within hours. Since then I have followed the slow reduction plan without any flares.
From May I slowed down even more and have been tapering by 1/4 mg. My last blood test in mid August show CRP of 3 and an ESR of 16. What has suprised me however is that I have been encountering side effects/withdrawal symptoms . The side effects are generally one sided. Tightness in right arm which lasted almost two months. Currently it's right knee not keen on bending since early October. Driving seems to set it off. No fun going up and down steps. Last few days I see an improvement though so I seem to be working through it and acupuncture has helped a lot.
As I have no pain these side effects are more a nuisance than anything but they are hard work and very tiring. I feel like the goal posts are constantly changing. My muscles are very weak too and am guessing that weak leg muscles maybe what caused my knee problem. I notice also, and perhaps this is due to cortisone being lower at night, that if I turn over during the night my arms are so so tired and I feel stiffness in my pectoral muscles. All is back to normal on waking. I am currently mid way between 1.5 and 1.25mg.
Generally quite tired but doing ok. Thyroid is a little out of kilter at the moment too but I guess it's part of the hormonal imbalance caused by pred. Hope this all may be of use to someone else on their journey.