Hello - I'm new to this site. I was diagnosed with PMR last August after five months of going back and forth to a GP at my surgery who obviously didn't know much about this illness as I had been telling her all the symptoms that I was suffering from but she didn't pick up on any of them. I eventually asked her if I could have my bloods taken and it was then they discovered I had PMR.
My own registered GP put me on 15mgs of Pred a day right away (thank goodness as I was in agony by then) and referred me to a Consultant at the Norwich & Norfolk Hospital who I saw some two/three weeks later and who said the 15 was too high and dropped me to 12 mgs daily. I had of course felt that a miracle had happened when I was first put on the Pred and continued with the Consultants cutting down regime (which she printed out) and was under the impression that in a year's time I'd be off the meds and be better! Of course not a bit of it as when I dropped from 8 to 6 at one point I had a relapse and phoned her Secretary who called me back later that day and said it's ok to go back up to 7mgs which did help. I continued with the cutting down schedule but in March when I got to 3mgs it has come back again. I called the Secretary again and was told I had in fact been discharged and would have to return to my GP to get referred again to see the Consultant. I was of course really upset at this news as I had not been informed of being discharged. However after another long week of pain I saw my GP two weeks ago who advised to go back up to 10mgs daily for five days and "then cut down again"! That's it - no come back for another blood test in a few months or come and see me again in a couple of months - no follow up at all other than "call me of you want to discuss anything".
So I thankfully found this site and today met up with a self help group in Norwich - MaryJane I believe you are one of the ladies I met today? I have also read the very good book by Dr Jane Gilbert which has given me more info on PMR. I initially thought it was an arthritis on the back I was suffering from but I know better now and I'm so glad I went along today to meet the other ladies who suffer from this horrible illness.
I'm going to try the "dead slow" method of cutting down as I think my regime was far too quick. I'm wondering if anyone else on here has tried the more slower method?