shoulder scan

[CJ-pmr15]

hi. I’ve had pmr for nearly 10 years. I’ve been up and down prednisolone like a yo yo. Last year I got to my lowest dose of 3.5 mg, but then had relapse after relapse and at the end of the year was back at 10 mg. My doctor noticed I was overdue an appointment with rheumatology and I saw a new to me rheumatologist. Thoroughly unsatisfactory experience. Was basically told I probably shouldn’t have been diagnosed with pmr as I was too young then (I was 50). They now want me to wait til I am having another relapse and then they want to scan my shoulders to see if I really do have pmr. I can’t say I have kept up with recent developments, but when I was diagnosed I don’t think that a scan was a diagnostic option. I just wanted to ask some of the experts on here if this is something that is now a diagnostic tool, because I really was not impressed with the complete dismissal of my prior diagnosis of pmr. Nor the fact that once I do relapse, I can’t increase my steroid until I have a scan and this usually takes a fair bit of time to organise. Sorry for ranting.

[piglette]

I am not sure the diagnostic tools for PMR have changed much in ten years. Basically eliminate everything else until you are left with PMR. If steroids work well you possibly have it.

[PMRpro Ambassador]

What sort of scan? PET-CT is a good option for showing where the inflammation is seated in PMR - and LVV and GCA.

This paper from 2013 discusses imaging in PMR

openaccessjournals.com/arti...

There were options 10 years ago - but whether a rheumy knew or cared is another matter.

But I'll bet half your problems is in this " I’ve been up and down prednisolone like a yo yo". When you get into a yoyo pattern with pred dose, it stores up problems for later on.

I'm also not impressed with the dismissal of your diagnosis - very unprofessional and whoever said that you were too young is talking rubbish. What hospital is this?

[CJ-pmr15 in reply to PMRpro]

The original rheumatologist had an interest in pmr and was very knowledgeable. So it is a bit galling to have his judgement questioned. I wasn't told what kind of scan. Forth Valley.

[PMRpro Ambassador in reply to CJ-pmr15]

Ah ha ...

Not sure what you can do - except find a private opinion, There is scanning that may well upset the dismissive opinion - it has happened a few times recently!! Though strangely, they never seem to admit they were wrong!!!

[Louisa1840]

Oh! Rant away - it's what we're here for! When I read experiences like yours it makes me wonder why we bother going to specialists at all? What rubbish saying you were too young for PMR. It's as bad as the rheumy I went to 2 years ago who told me I couldn't possibly have PMR becasue it only lasts 2 years. I should have walked out then and there and wish I had!

I now manage my PMR (7years in) with the aid of this invaluable site and a very understanding GP.

All the very best and every blessing.....

[AtopicGuy]

How were your blood tests (especially CRP & ESR) at the time of diagnosis? How did they respond to prednisolone? What level are they at now?

[CJ-pmr15 in reply to AtopicGuy]

I don't know my levels but I do know they go up when I'm relapsing and down when prednisolone is increased. And I'm pretty glad they do. I know my GP likes to test them when I say I am relapsing and won't suggest increasing my dose of Prednisolone until he sees the result.