Pain

[2013mayo]

Hi everyone,

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.

[PMRpro Ambassador]

Find a different rheumy?

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.

[2013mayo in reply to PMRpro]

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.

[DorsetLady PMRGCAuk volunteer]

Certainly sounds like a flare, what dose are you on at the moment...nothing on profile..have a look at this post -

healthunlocked.com/pmrgcauk...

..and as PMRpro says get another rheumy.

[2013mayo]

Hi,

Yes I’m on pred 5mg, I’ve been on this since 2016 for GCA at a much higher dose, also PMR.

I’ve also in the past been on toxcilizamub.

My rheumatologist has recently put me on hydroxychloroquine for mouth ulcers.

I’m on various other medication that are to take as I’m on pred.

[piglette]

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.

[2013mayo in reply to piglette]

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.

[piglette in reply to 2013mayo]

If you have GCA you do need a rheumatologist.

[2013mayo in reply to piglette]

Well that’s who the eye hospital put me on to.

[piglette in reply to 2013mayo]

It is people will PMR who can manage without a rheumatologist.

[2013mayo in reply to piglette]

🤷‍♀️

[YuliK in reply to piglette]

Trouble is piglette, unfortunately we need the prescriptions for medications from the rheumatologist. Can’t buy OTC without prescription.

Rheumatologists can sometimes diagnose the wrong ailments, we have good ones too, who really do understand our pains.

YuliK😷

🌹🌹🌹

[DorsetLady PMRGCAuk volunteer in reply to YuliK]

Can’t your primary care doctor write prescriptions? That’s what happens mainly in UK, although sometimes it’s the specialist - we can’t buy OTC.

[YuliK in reply to DorsetLady]

Yes DL, of course the GP can,..

I seem to have my wires crossed. Brain fog. 😳

YuliK😷

🌹🌹🌹

[DorsetLady PMRGCAuk volunteer in reply to YuliK]

No worries. 😊

[tangocharlie]

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.

[2013mayo in reply to tangocharlie]

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?

[tangocharlie in reply to 2013mayo]

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?

[2013mayo in reply to tangocharlie]

Because I had no pain when he phoned me a few weeks ago.

[tangocharlie in reply to 2013mayo]

But was that because the pain was being controlled by steroids, as they're supposed to do? Sorry if I've got confused or missed something

[2013mayo in reply to tangocharlie]

Me too, read my update, I’m more confused than ever.

[bBarnabus in reply to tangocharlie]

Does a pet scan confirm pmr?

[PMRpro Ambassador in reply to bBarnabus]

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.

[tangocharlie in reply to PMRpro]

Or a very low dose of Pred - the last one I was down below 10, maybe even below 5, I can't remember now

[PMRpro Ambassador in reply to tangocharlie]

The lower the better - and no-one really knows.

[bBarnabus in reply to PMRpro]

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

[PMRpro Ambassador in reply to bBarnabus]

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.

[bBarnabus in reply to PMRpro]

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

[DorsetLady PMRGCAuk volunteer in reply to bBarnabus]

bonkers. obviously doesn't understand PMR..

[bBarnabus in reply to DorsetLady]

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

[DorsetLady PMRGCAuk volunteer in reply to bBarnabus]

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!

[PMRpro Ambassador in reply to DorsetLady]

or patients ...

[sandydame]

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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