PMR??

[HJC321]

Any advice please? I have gone from having right shoulder and arm pain and being told by my GP (after CRP and ESR blood tests that were “satisfactory” ) that it’s not PMR but probably osteo-arthritis. Anti-inflammatories haven’t provided any relief. Now I have aching and pain in both shoulders and pain in muscles in right arm. What now can my GP do - or what should I be asking for in the way of getting a diagnose? I have seen Ortho Consultant back in the summer and had MRI on shoulder which didn’t show anything. Thank you!

[Daisyfield]

I had normal bloods. Bilateral shoulder pain mainly in muscles. R shoulder worse than left.

GP suspected PMR and I was diagnosed on good response to steroids.

Have had full bloods, BP and ecg all normal.

Worth going back or second opinion.

[jinasc]

academic.oup.com/rheumatolo...

The above should prove useful.

[SheffieldJane]

It would be useful if your doctor could give you a week or two’s trial with Prednisalone. Your response to it will be a helpful diagnostic tool. Not all patients show raised inflammation levels in the blood. I think as many as 20% do not. It certainly sounds like PMR. Have you been tested for Rheumatoid Arthritis to discount that? It behaves more similarly to PMR than Osteoarthritis. Good luck, Don’t be palmed off.

[HJC321 in reply to SheffieldJane]

Thank you Jane - no haven’t been tested for RA so that’s something I will request. I thought that mainly affected hands and feet as I remember my mother’s started there - but worth investigating thank you! A trial on steroids does sound a sensible idea, even though they are my worst nightmare....

[Daisyfield in reply to HJC321]

Yes I was tested for RA and negative.

Yes I was terrified of taking steroids or any drugs to be honest. I cried taking first dose more as an acceptance I was ill.

I don’t like it now but they have changed me from hunched over and in pain to being pain free though stiff at times. I have not nasty side effects. (Yet?)

Can’t wait to be off them though.

Hope you get the pain relief u need.

[HJC321 in reply to Daisyfield]

Thank you that’s encouraging and also glad you haven’t had side effects. What dose are you on please?

[SheffieldJane]

When they are the appropriate and only drug for a painful, debilitating condition you do learn to embrace them and deal with potential side effects with diet, supplements, light exercise , pacing activity. Let us know if you are diagnosed and people will share their wisdom.

[DorsetLady PMRGCAuk volunteer]

Think you need s second opinion

My “frozen shoulder” diagnosis following satisfactory markers -turned out to be GCA. Unfortunately because I was naive and believed GP it was undiagnosed for 18 months by which time I’d lost sight in right eye!

Not everyone has raised inflammation markers - so symptoms must be the key... and yours sound suspiciously like GCA.

Please hassle for more investigations, and obviously if you get any jaw or sight issues go to A&E.

Please keep us informed.

[HJC321 in reply to DorsetLady]

I remember reading about your GCA journey earlier in the year. So awful for you. 😢 You say you trusted your GP,s initial diagnosis of frozen shoulder, but anyone would have been the same as we do put our trust in their knowledge. Because I stood up from the chair unaided in his consulting room he said “my patients with PMR can’t do that” and so as you did, I trusted what he said and came away with anti-inflammatories. It’s really getting me down now though so I will go and ask for further investigation but not sure what that would be, apart from, as someone else suggested a “trial” few weeks on Pred.

[DorsetLady PMRGCAuk volunteer in reply to HJC321]

Yes we trust them, and obviously they don't know everything, but you would hope they might do a bit more investigating sometimes.

I never had PMR, so no problems in standing/walking like you - just excruciating shoulder pain initially (before head joined in some considerable time later). Plus never heard of either illness, so never thought to question diagnosis at the beginning, and even when I did in following months when no improvement, everything was attributed to frozen shoulder syndrome despite being both sides, not just one.

Mine started 9 years okay, I had hoped things had moved on since then, and in some instances they have, but they don't seem to have filtered down to some GPs.

As your marker were deemed satisfactory it might be interesting to actually ask for the readings (for your interest) - but as has been said not everyone has raised markers. Mine were deemed"satisfactory" the same as yours - but after I saw my records some time after they were not, most people on here would say they were slightly raised - trouble is so many things can affect ESR.

A short trial of Pred -for a week or maybe two would give the answer. If it makes no difference then you can stop medication without any problem, and GP needs to look elsewhere. If it helps, then as the saying goes : if it walks like a duck, sounds like a duck, then it is a duck!

Obviously most doctors don't want to put you on steroids for no reason, but as I said a short sharp burst does no lingering harm, and may be exactly what you need - but you won't know until you try!

[Bonnie-ma in reply to HJC321]

I was described as ‘atypical’ at the start - there seem to be quite a lot of us. Your description of being able to get out of the chair without too much difficulty prompted me to reply. My Rheumatologist told me ‘You don’t look like someone with PMR, you are very mobile.’ I also had pain on one side only in my upper arm. On the basis of raised ESR and CRP I was put on a much smaller starting dose of Pred. The results were miraculous and confirmed my diagnosis. Good luck.....

[HJC321 in reply to Bonnie-ma]

Thank you for your reply - am so glad you had a very good result with steroids. My GP seems to think the same as your Rheumatologist said that I don’t look like someone with PMR. If the pain/aching is all in shoulders and arms though, I’m hardly going to need help standing from sitting as he seems to think anyone with PMR would. Think I will have to insist on a trial of steroids although I’m really scared of the side effects although some of the ladies on here say they are manageable. What dose did you start on please?

[Whitner in reply to HJC321]

I am newly diagnosed with PMR and just started prednisone in October. 20 mg for one week now at 15 mg for the next month then back to doc. My only elevated number was my CRP and that was just a 5. I also had pain in my shoulders and upper arms, but hips and thighs too. Initially got cortisone shot in right hip for bursitis. So far I have experienced no real side effects for which I am grateful 😊

[HJC321 in reply to Whitner]

Glad you’ve had no side effects from steroids and hope your aches and pains now under control. Thanks for your post 👍

[Whitner in reply to HJC321]

Thanks! Yes my pain is under control. I hope you will soon get some relief too!

[PMRpro Ambassador]

I agree with DL - at the very least a different GP who knows a bit more about PMR and will look at up-to-date medical literature.

[Melodyvine]

My ESR wasn’t particularly raised either but the main giveaway was the bilateral pain in both shoulders which, I always thought, together with a rapid response to steroids was a good indicator of PMR. No harm in trying steroids for a week although of course they are also used to treat pain other than PMR.

During the course of my PMR which lasted 3 years the pain moved to include hips and knees but, it was always bilateral.