I was diagnosed with PMR in June 2021 by a trainee GP. She was supervised by a more senior GP in the practice. The trainee left and I've now had 2 phone chats with the senior GP. I initially felt she did not believe the PMR diagnosis because I could still wash and dry my own hair, most of the problem was in my lower body but I did have pain and stiffness in arms, shoulders and neck. I went from 15mg pred to 12.5 to 10 without a prob. When I tried to go to 9 mild arm and shoulder pain and weakness returned. In a phone chat the senior GP suggested I return to 10 for a few weeks then do a 10/9 alternate days for 2 weeks then go down to 9 where I now am. On returning to 10 this no longer seemed to fully control the arm etc prob and at 9 it's still there. The GP has now said for me to have a f2f with her. She wants to check out my arm probs, says she doesn't want to put the pred dose up and mentioned alternative medication. I'm concerned she's going to suggest I see a rheumie (beyond difficult in SW Scotland as I don't drive), will suggest it isn't PMR and insist I try to go lower with pred dosage. When ordering more pred another GP in the practice called me to say I needed to be lowering in 1mg steps down to zero yet I recently met another patient who attends the same practice, who told me she has had PMR for 13 years, so there are GPs in this practice who have knowledge of PMR. Any suggestions on dealing with my GP at my f2f would be welcome.
F2f with GP: I was diagnosed with PMR in June 202... - PMRGCAuk
F2f with GP
You probably needed to up your dose by around 5mg for a week to hit the PMR on the head then drop back to say 10mg. As alternative medication does not really work for PMR it is a bit of a waste of time unless she was thinking of a DMARD which may or may not help.
You do seem a bit like me. I kept going up and down with my steroids, then got sent to see a rheumatologist. Other conditions have similar symptoms and steroids work while you are on them. You can't stay on them though as they can cause all sorts of problems. I was after a lot of tests found to have inflammatory arthritis but still got PMR as well and now Sjogrens as well. I am still on 4 mg Pred as well as Methotrexate and I inject with Imraldi. My first symptoms were in 2013 and my last diagnosis last year. Good luck.
"You can't stay on them though as they can cause all sorts of problems" - you can.,and problems aren't inevitable. I confess to thin skin on my shins - after heading for 13 years ...
Well I suppose I meant GP's don't want you to stay on them. I am still after 8 years but I have glaucoma, not necessarily caused by my steroids as my mother had it also and that was before she had PMR. I also have cataracts, normal and steroid ones apparently. I was told to come down and get off steroids completely but I always flare and go back to where I was. I should add I am talking about going to 3 mg instead of 4. My consultant doesn't seem bothered by that any more.
Well if she wants to introduce alternative medication - what does she mean? But she can't introduce anything in the way of steroid sparers without a consultant referral ...
I'd get an appointment with the GP who knows more about PMR. The inexperienced GPs just go by what they have Googled, ie it'll all go away in 2 years, taper the steroids by 1 per month. The reality is usually very different to the textbooks. I'd read up all you can on here then go with a list of questions. The main point made over and over again on here is that you aren't relentlessly tapering to zero steroids, you are trying to find the lowest effective dose that effectively manages symptoms, and flares are common, especially in the first year and when you reduce, the doctors don't tell you that. You also have a good Helpline in Scotland who can answer your questions look at pmrgcascotland.com
Thank you to all who replied to me. I had intended to ask the GP if I could go up to 15mg briefly then down to 10 for a few weeks then carefully taper down very slowly (less than 1mg every 4 weeks as the GPs have been suggesting). I had hoped that I'd get some autonomy over controlling my tapering and so prevent bouncing up and down the dosages. Now I'm a little apprehensive that the GP has something else in mind. As to getting to see a different GP it's almost impossible. In my surgery GPs only work 2 days per week and f2f appointments are harder to come by than gold dust that's if you can get past the reception staff who decide who, if anyone, you see. I don't have any doubts that I have PMR - no prior health issues, taking no medication, then sudden onset of bilateral symptoms, symptoms very quickly quashed by steroids, sister had it etc. Thanks again to those who replied.
Set out your case to the GP, have the information that you can get from this group and please fight your corner, it’s not a race to get off the steroids but a slow steady walk. You probably have no intention of staying on steroids unless you absolutely have to but you also have no intention of having the kind of pain PMR brings if it is uncontrolled.
I am sure the GP will listen providing you have the evidence that proves you aren’t being stubborn, just ensuring that your body has the best opportunity to deal with the inflammation in its own time
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