After three and a half years I finally came off pred about three weeks ago, after speeding up my tapering down as instructed by my rheumy. I did this with some hesitation because I was beginning to get the pains in shoulders, arms and lower back again. My rheumy told me he had doubts about the PMR diagnosis and said he thought it was fibromyalgia.
For many weeks now I've been having to take maximum doses of paracetemol, codeine phosphate and Lyrica because the pain has become as great as it was before the original diagnosis, three and a half years ago. The only thing giving me a little comfort was the thought that I was off of steroids at last.
I saw my rheumy today. He asked me how I was and after hearing what I had to say he then told me that my last two or three blood tests had indicated slightly raised inflammatory markers (yet he had insisted I continue to taper off the pred despite my telling him about the flare up). He ordered yet another blood test and told me to start up on pred again at 15mg per day.If the symptoms have gone in two weeks, he says, then I do have PMR. If they are still there after two weeks then it's something else and they'll have to carry out further investigations.
I'm reaching the end of my tether, there seems no end to this wretched illness!