Hope you can help, I’ve been struggling with pain in my shoulders, my neck, my hip and now my wrist. I did have this type of pain last year and my doc put my pred up to 20mg for five days, it really helped. My problem now is that the last time I spoke to my rheumatologist I was not having any pain only slightly in my shoulder. He decided I don’t have PMR and its just a bit of osteoarthritis. This is not osteoarthritis, I know that pain, I’ve had a hip replacement and am well aware of that type of pain. The pain I’m experiencing at the moment is in several joint and muscles.
Any ideas please.
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It is fair enough for him to claim OA - but he needs to provide evidence. It never ceases to amaze me how many think OA causes muscle pain. And dismiss the patient's experience of their pain - they feel it, not the doctor.
Thank you, Yes I agree, I think he rather rushed in to blame OA, I’ve sent an email explaining my problem but they can take anything up to a week or two to get back to you.
My problem is now that he’s decided OA it will be difficult for my doc to treat it as PMR, they have been like this in the past with me for different illnesses, I don’t seem to follow the rule book for standard illness and as a result I’ve had huge medical missed diagnosis.
Do you need a rheumatologist? I had a rheumatologist who wanted me to drop down my dose of pred like a lift. My GP agreed I did not need him and we could manage without him. 75% of people with PMR never see a rheumatologist.
Hi, Well I need to keep him onboard because I also have GCA and really need help with that, also he has put me on treatment for lupus, hydroxychloroquine which has really helped with my mouth ulcers.
Unfortunately not all rheumatologists are clued up abut how to diagnose and treat PMR, some are, some aren't, the latter do more harm than good. I kept being told I was 'too young' to have PMR and was misdiagnosed for several years with everything from different kinds of arthritis to fibromyalgia. I was also told emphatically that even if I had had PMR it would have gone after 5 years. I pushed and pushed until I got a a PET-CT scan, which, guess what, confirmed I still had PMR. So I'd go back to your GP to ask the questions is it or isn't it PMR? What tests can I have? eg PEt scan or other scans to rule out other shoulder problems, maybe explain you dont have confidence in your rheumie and would like another opinion.
Thank you, Trouble is the original rheumatologist who I saw told me I did have PMR, then this new rheumatologist took over my care and has now decided 3 years later it’s not?
So that's your key question then for the doctors, is it or isn't it PMR? More tests and investigations are needed. It sounds like you think it could still be PMR lingering and your hunch may well be right, or may not. On what basis did they conclude it wasn't PMR?
A PET-CT can providing the patient isn't on pred at the time - it can mask the signal and you don't see there is still inflammation in the requisite places for a PMR diagnosis.
Thanks that clears it up. as, as I have previously mentioned my rheumatologist declared that I had no pmr on the basis of a pet scan, despite the fact I was on 21 mgs of deflazacort at the time
For goodness sake - that's equivalent to over 15mg prednisone. VERY unlikely there was enough inflammation to show on the scan. If you could do PET-CT scans without reducing the pred dose the people who recently have been made to reduce their doses to have one would have been delighted. Especially the ones where the radiologist decided quite late their doses weren't low enough.
Yes I have no confidence in her she then demanded I reduce from 21 to 6 in three months and report back . Needless to say I got to 12 and got pain and fatigue back. Actually debilitated
Yes I know you are used to this sort of thing but I still find it perplexing and depressing that our only line of support are incompetent . What have they been learning in all those years of training. In her defence I don’t think they come across pmr much in the south of Spain. So she’s probably just digging out some out of date text
No maybe she doesn't, and honestly I don't think PMR is covered much in the medical training per se, but one would hope Rheumies had a bit more knowledge about their specialities.
Problem is, if they look online to the guidelines from their own organisation which are apt to quote the textbook tapering - which may work for some, but certainly not all - they may not want to deviate from that!
Sorry you are having all this pain. I had severe pain in my left shoulder down my arm in my elbow in my wrist but it also begin to spread across my upper back. And felt like PMR pain even though Rheumie didagreed. Said well it's not on both sides and PMR pain is typically on both sides. So she agreed that I could go to physical therapy and try working on the shoulder pain which I did though I didn't expect it would be of any help but in fact it was very helpful.. Not only that but I received wonderful massages to my left shoulder and arm and a lot of very helpful caring people at PT which is very different than going to medical appointments. However,I do still wonder. There are those on here that can answer it better than. I. Can a painful joint injury or problem which could be osteoarthritis bring on a flare-up of PMR?? I had osteoaritis in my left shoulder it turned out x-ray showed it to be mild and a very small area. I still feel I had BOTH kinds of pain the joint pain and the PMR pain I can recognize PMR
as such. Also is it possible that PMR activates in the areas of our body that tend to be weaker and more vulnerable because of former problems . I.e. I was an avid tennis player though I had to give it up many years ago as I was developing tennis elbow but I gave up my tennis game because I saw others that were playing with braces on their wrists their elbow sometimes their knees sometimes their ankles and I decided no I'm not doing that. Much as I loved tennis I switched to swimming. The onset of myPMR. About 8 years ago at 72 took place in my left shoulder and spread all over my body. I woke up near unable to walk or even get out of bed it was a dramatic onset. It still seems when I have a flare that it begins in my shoulders so I wonder about these vulnerabilities?
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