Like so many of us here I had never heard of PMR when I was finally diagnosed with it after blood tests showed inflammation. I was thrilled when my doctor put up my first prescription, rushed to the pharmacy and couldn’t wait to pop a pill into my mouth. It was already seven months since the pain and stiffness had gradually reduced me to an invalid, terrified that my active outdoor life with my ponies and dogs would end and I would be in a wheelchair.
That was 2017, and I knew nothing about the condition I had been told I had. That was eight years ago yesterday and I am still tapering my prednisolone, today for the first time ever I took just 2.5mg. So much for the two years my doctor told me would see the condition burn out, just taper the dose. Whatever possessed him to prescribe 50mg of pred for three days, I have never known.
I can’t believe that every day on this forum somebody posts for the first time after a diagnosis of PMR having been told pretty much the same as I was back then. How and when will the research that is being done by a group of informed consultants all over the world filter through to rheumatologists and doctors so that this life changing condition is properly diagnosed and properly treated?
This forum and the charity behind it are leading the way to raise awareness but how can we, the patients, get the message across?
Written by
Zebedee44
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There is a new PMRGCA and steroid tapering information booklet to be issued by VersusArthritis in the near future - it is issued to rheumy departments and GPs to be given to patients. Obviously it can't be terribly detailed but it is about 16 pages of distilled wisdom and includes starting doses and suggested tapering approaches which it is also pointed out may need to be adjusted for the individual.
Three top rheumies, the charity and I all had input - we hope it doesn't get changed. But we worked hard on it because we wanted it to be correct and cover most bases. So if a doctor comes up with something truly weird in future - patients should be able to point to the booklet.
I didn't do a lot other than a couple of fun discussions with one of the rheumies! And I read it - putting my views in and then at the end to say I could live with what it said!! There are bits I'd like to be different but it had to be a consensus and we got that. It is a lot better than it was!
I’m celebrating the anniversary with this possibly rather optimistic taper to 2.5mg, but not at all sure my body is ready for it. I would really like my adrenal system to join in with my return to normal activities. I seem to have become a dormouse, spending more daytime hours sleeping than awake, although sleeping at night is patchy!
Well, I hope you're dreaming of ".....geraniums red and delphiniums blue...." (I know my A A Milne! 'The Dormouse and the Doctor' is one of the poems I recite when I can't sleep!) 🤣
I failed by just three months from getting into the 8 year club! Been on zero now for two years and three months, and going ok.; perhaps the PMR is in remission?
I’m not thrilled to be in the eight year club Charlie1boy. I wasn’t thrilled when the doctor said two years. I certainly wasn’t planning this long haul journey. Well done for getting to the end.
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