I last saw my Rheumy in January. She was very concerned because I hadn't done as instructed which was to reduce the pred dose regardless. I seemed to be stuck at 7mg. I had already been having increasing pain in hips and shoulders and the deadly fatigue and night (and daytime) sweats. She was very insistent in pointing out that my inflammatory markers are normal and when I point out that they always have been she replies ".......yes, exactly". She is convinced that I have never had PMR although she can't come up with anything else. She says that the 'condition' doesn't behave like PMR. She even arranged a CT scan to look for something else but there wasn't anything to be found. I was told that the fatigue and walking in treacle feeling was due to having put weight on (accepted) and being on pred too long which has affected the muscles in my legs. Instruction was to get off pred ASAP, lose weight and get some condition back!
I did my best to comply but at the end of last week everything hurt so much that I took it upon myself to take 15mg daily for 5 days as it took that long to get relief originally. Magic! The short walk I do with my dogs was a delight instead of an overwhelming effort and I could walk up the few steps in my garden!
I have now taken 12.5mg for two days but don't know what to do next. It's a struggle to get a telephone conversation with a GP. I know I will need to but how should I proceed until then? It will be next week now before I can talk to anyone. I certainly don't want to speak to Rheumy.
I hope I've given you all the info and look forward to the really good advice available here. Thanks in advance.