Hello everyone. Recap – 69 years old male and up till 2 years ago very fit and active. I’ve posted a few times before but this time I really need some advice!
After 2 years on Pred, I reduced to 4.5mg, and have had, depressingly, to increase again to 7.5mg. Sadly splitting the dose didn't help, but Thanks PMR Pro. I’m feeling very low, in the middle of Glaucoma eye surgery and with a Massive Rotator Cuff tear in my shoulder since June. Even bigger changes in lifestyle seem imminent.
I had a 35 minutes consultation with my GP the other day (!). He’s latched onto my (ex) Rheumatologist’s diagnosis of “presumed PMR” and her comment of “normal inflammatory markers” - all while on Pred. The Rheumatologist I saw twice has now discharged me, telling me to continue as I was, reducing Pred slowly. She wasn’t particularly interested, did nothing but ask me about myself and seems to think PMR is for elderly ladies. No-one has ever suggested an alternative diagnosis for a previously fit and active 68/9-year old man. The G.P. was reluctant to refer me to the rheumatologist in the first place and has always been sceptical of me having PMR. So he’s asked me to think about coming off Pred , both of us knowing full well that he hasn’t an alternative diagnosis. I don’t remember the names of all the 3 alternative drugs he suggested but one was Amitriptyline which I have found out can be used to treat nerve pain. It has its own set of unwelcome side effects of course. I’m not happy with the G.P’s approach which is verging on “suck it and see”.
So I’m now confused and feel a bit cornered because he knows I’m very motivated to get off the Pred. as there is a chance that my raised eye pressure and shoulder tendon problems have been exacerbated by its use. So I want to find an interested Consultant in my area who really does understand PMR and who will give me a confident diagnosis (“yes” or “no” and if “no” “what” etc etc) and treatment plan.
So is there anyone in the West Midlands who feels able to recommend a Consultant Rheumatologist with a proven record of accurately diagnosing and treating PMR? I’ll travel anywhere within 50ish miles of Birmingham - Bristol certainly.
By the way, be aware that when the Pred leaflet gives Tendon Damage as a side effect, they mean due to fairly ordinary exercise!