Took almost 4 months to get a rhematologist appointment. Went to my GP and told him I was having trouble sleeping, my shoulder hurt and having trouble moving in the morning. Since I had a frozen shoulder about 10 years ago that required surgery on my left shoulder and have had therapy on my right shoulder a few year later I went back to my shoulder doctor. I was given a shot of cortisone. By the next day I was feeling good all over and sleeping. Started physical therapy on shoulder but after about 4 weeks was getting worse. Switched GPs as I was getting nowhere and I had gotten to the point that I was in pain trying to tie my shoes. The GP gave me a 5 day pack of presnisone (type used for allergic reactions) and instantly I was better again. But GP did not want to give me prednisone and started running tests. I researched topics and came to the conclusion my problems were PMR. Problem was that my CPK was only 8 mg/L. GP is thinking it is not PMR. I kept getting worse and was having trouble getting out of bed in the morning, I would struggle to get the covers off. I would not get down on the ground if I was not near something I could push off of. I could not get off the couch without moving to the edge first and pushing with my hands. The GP finally gave me a prescription for 1 mg prednisone/per day. That did help but within 2 weeks and lots of begging I got 3 mg presnisone per day. That helped more but still did not solve my problem. I finally got rheumatologist opening a few weeks early when someone canceled. I got script for 20 mg/ day. After a day I felt like dancing in the street. Just moving my hand was easier. I could get off the couch with ease.
I have been out cross country skiing and have been on the treadmill for 2 miles a day on a 12% incline (I had been in good shape and did numerous hikes of 5 miles or more during the summer). Down to 12.5 mg after 6 weeks but will stay at this level for another 6 weeks as I could feel pain coming back on and last longer, not bad but took 2weeks to adjust to this dose.
My SED rate is always okay. My CRP is now 1.0! But have others had a low CRP value as well. As another point I have hemochromatosis which means I can generate too much iron and have to give blood to keep the ferritin level down. I wonder if that comes into play