Sorry but time for a bit of a rant. 2nd appointment with rheumy this morning. Same one who diagnosed PMR 4 months ago (after I'd been on steroids since January) and was happy for me to manage my steroid withdrawal. I'm currently on 8.5 mg. He now doubts his diagnosis and wanted me to reduce at 1mg a month to 'see what happens'! Because my ESR levels have not risen since GP first suggested PMR he now says it can't possibly be that. He also informed me that PMR is an inflammatory disease, NOT an auto immune disease. Anyway I argued that 1mg a month was far too fast and he finally agreed to half mg per month. I have a feeling he is going to write to GP with his instructions to continue to reduce no matter what. He says if I do that and the pain comes back, then he 'may' start steroids again and I 'may' be an atypical PMR sufferer' I left hospital very annoyed and feeling totally unlistened to. He wasn't interested in the fact I feel fluey and quite ill a lot of the time and very, very tired. He just said that could be anything!!
Oh well, rant over. Thanks for listening. Let's see what some of you think. 😖