PMR diagnosis?

[arvine]

I am so very confused, initially, was understanding PMr, was bilateral stiffness, shoulders, hips etc, cant raise arms(that,s what happened to me), etc, but now Im reading people are having stiffness in neck, back, knees, every part of body, that have been diagnosed with PMR, ??

[piglette]

As you say Classic PMR is bilateral stiffness in shoulders and hips. A lot of people will PMR can have other things too. PMR can cause tendon problems as well. Also quite a few people diagnosed with PMR do not have it, it could be things such as rheumatoid arthritis, fibromyalgia, cancer, vitamin D deficiency and several other things.

[arvine in reply to piglette]

Wow! that leaves a lot of possibilities, some people have had special tests for PMR, not sure what though, but medical professionals, and technology should be a way of narrowing down diagnosis, before putting patients on high doses of pred, which takes so long to taper ,

[DorsetLady PMRGCAuk volunteer in reply to arvine]

There is no special test for PMR, it’s ruling out other things first - this picture shows major areas affected, but it does also affect hands/feet.

PMR areas

[arvine in reply to DorsetLady]

as I said to powerwalk the "moaningviolet" on this site, said a PETscan confirmed PMR, ? that,s why I questioned

[Stills in reply to DorsetLady]

Very useful graphic

[piglette in reply to arvine]

They reckon that on the initial appointment GPs only get 40% of any diagnosis correct. I suppose in a lot of cases it does not matter as the body recovers without needing medical help anyway.

[arvine in reply to piglette]

whoah! no kidding, well don,t know about body recovering, without any medical help, but any inflammation, contributes to all types of diseases, affecting all internal organs , but then again, prednisone does too, so frustrating and confusing for us all for sure

[piglette in reply to arvine]

I think quite a lot of people go to their GP with short term problems. One GP told me that he had seen someone that day who had come to him with a paper cut and people often came in with splinters and love bites.

[Hidden in reply to piglette]

No wonder my surgery is staffed by a locum who only does telephone consultations

[arvine in reply to piglette]

hmm, well admittedly those are a lot of minor issues, but PMR, GCA, RA, etc certainly dont fall into those categories,

[Joseph14612]

My PMR started with severe stiff neck and very painful shoulders....

[Dochaz]

Mine started with difficulty lifting my legs (both sides) when putting on my shoes. Then difficulty turning over in bed (back stiffness), then when getting in and out of the car or climbing stairs or getting up from a sitting position. Also shoulder and neck stiffness (both sides) when lifting my arms.I didn't consult a GP, thinking I was just getting old (I was 62-63).

It was only the onset of deathly fatigue (couldn't cook for more than 5 mn without sitting down for a break, getting breathless going upstairs) that got me into the waiting room.

Turned out I had already developed GCA/LVV

[Zebedee44]

According to Prof Dasgupta, now retired specialist in PMR and GCA, an intitial diagnosis should be confirmed by appropriate scans to eliminate possible alternatives. I wonder how many people had that offered? Certainly not me six years ago, but I am determined to get some further investigations made by a Rhematologist now so that I know what I am dealing with as I struggle to taper from 6.5mg with daily pain in my jaw and chin as well as the classic shoulders and neck.

I think it is easy to get lost in the system and left to deal with long term illness without much input from our overworked doctors, hence the daily questions on this forum which informs and supports us so well.

[Seablue22 in reply to Zebedee44]

When my symptoms started in August 2022 I was given a PET scan, CT scan and ultrasound to rule out any other diagnosis including cancer. This may have been because of my high inflammatory markers but I have to say they were very thorough.

[PMRpro Ambassador in reply to Zebedee44]

I don't imagine for a moment that even HIS PMR patients got the only useful scan - a PET-CT. And it is only worth it pre-pred,

[Zebedee44 in reply to PMRpro]

My Welsh GP prescribed 50mg pred for three days, followed by 25mg for a week. He clearly didn’t have a clue, but I was so desperate to be rid of the pain and stiffness that I took the first dose as soon as I got it from the dispensary. No follow up was ever offered.

You seem to have had a far better response Seablue22.