I'd be grateful for any thoughts on my situation. After seeing the same rheumy for 8 years, and feeling she was sympathetic to my VERY slow Pred reduction, yesterday she said she was discharging me back to my GP as basically I made the decisions about my steroid reduction and she wasn't adding anything to the discussion. She basically said she didn't think I had PMR anymore 'because the natural course is 2 or 3 years' and that any aches and pains I may have when I reduce the dose is 'wear and tear from ageing' (I'm 58, was 50 when diagnosed), and anyone would feel better on steroids so that doesn't prove I've got PMR. This is despite the fact that last year when I developed severe shoulder pains a month or so after my reduction from 4.5mg to 4mg, which I put up with for 4 months during which my ESR crept up (it's always reflected my clinical state), she seemed very happy that I'd finally gone back up to 4.5mg and seemed surprised that I hadn't done it before! She seemed to imply that my problem is being on steroids for too long so that I've stopped making my own and any reduction will take my body several weeks to recover (I did know about this). She said that it was up to me to decide how and when I reduced the steroids and while it would be better to be off them, in the grand scheme of things, as I'm under 7mg, the risk of side effects is negligible.
Just to fill in on the background: I was diagnosed with PMR 8 years ago, responded initially fairly well to 20mg Prednisolone but probably went too quickly to 12.5mg as I had a nasty flare and it took me 4 months on that dose to begin to feel OK again (GP and rheumy both suggested I stick it out rather than go back up to 15mg). That gave me the revised diagnosis of 'atypical PMR' and various letters from rheumy said I wasn't responding to Pred as well as she had hoped. Thereafter I was on a slow slow reduction of 0.5mg every 2 months or so, which usually gave a few weeks of increased stiffness but basically was OK. At 6.5mg I started the one dose reduction per week method and that worked well. However over the last 3 years I've only gone down from 6.0mg to 4.5mg because at various points when I was about to reduce again, something else cropped up like anaemia they wanted to investigate, or anxiety/depression (not linked to the PMR) and both the GP and rheumy said to wait till they were sorted out.
I am left now a) feeling like I'm being told I'm responsible for the situation by not reducing faster b) being a bit soft for not putting up with the aches and pains I might get when reducing, and c) wondering what to do next.
I'd be interested in other people's experiences of being on steroids as long as I have, of reducing below 4mg and also of what kinds of aches and pains you put up with when reducing at this stage?
Sorry for the rant!