PMR diagnosis

[Jean56]

Having had PMR for just over two years and all its attendant problems. Talking to a friend whose been suffering PMR type symptoms for over a year and being told by her doctor the inflammation markers are not high so it’s probably fibromyalgia. I know from this forum and from my own experience that you don’t need to have raised levels to still suffer from this dreaded autoimmune disease. Is there any research she can read and present to her doctor that would help the doctor to reconsider?

[jinasc]

If she can talk her GP into giving her 15mg of pred for 3or 4 days and then if the aches and pains subside quickly, it is PMR. Fibro does not respond to Pred.

Someone else might come along with a better idea.

You could also read and download by following the link to BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica (PMR)

: pmr-gca-northeast.org.uk/us...

[Jean56 in reply to jinasc]

Thank you I will print the guidelines, useful. Will also suggest trying to persuade doctor to give Pred a trial. I’ve watched her gradually get worse over a period of time. Just saying it’s fibromyalgia you have to live with it isn’t an answer. Plus she’s trying to hold down a demanding job. I have the greatest admiration for her, I couldn’t do it.

[DorsetLady PMRGCAuk volunteer]

Can she request a referral to Rheumy for confirmation? In the meantime, as jinasc suggests a trial of Pred.

[Jean56 in reply to DorsetLady]

Thank you. I know she’s seen a consultant a while ago but think that was to do with a fall she had and a cracked vertebrae. It’s really not fun this getting old, better than the alternative but exhausting having to always be proactive, when you least feel capable.

[Hidden]

We often talk about the 20% who don't have raised markers so I presume it came from somewhere....

[Hidden]

ncbi.nlm.nih.gov/m/pubmed/1...

[Jean56 in reply to Hidden]

Thank you. I will read, mark, learn, print and hand it on. I know doctors often don’t like us to be proactive, voice opinions but at the end of the day it’s our body, our life. It’s soul destroying dealing with constant pain. She’s a lovely lady, who gives so much to our village and to see her struggling is heartbreaking. Especially when a short course of Pred could prove the answer. It worked for me after six months of trying to get a diagnosis.

[Hidden in reply to Jean56]

I wish her luck. It's a proper bit of research and with the guidelines has to support her asking the Dr to at least a test run of pred. No harm.no foul.

[SheffieldJane]

The proof of this pudding is in the eating, of Prednisalone, it does nothing at all for Fibromyalgia but should dramatically improve the pain and stiffness of PMR within days. She could ask for a trial starter dose of 15 - 20 mgs for a week. Fibromyalgia strikes me as a lazy sort of diagnosis in too many cases.

[Jean56 in reply to SheffieldJane]

I couldn’t agree more, you’ve definitely hit the nail on the head, a very lazy diagnosis. It makes me so cross we have to fight to get proper treatment. We both go to the same doctors practice. I’ve been trying to persuade her to see the doctor who, reluctantly, diagnosed my PMR. My inflammation levels were low. It took my husband voicing his opinion of my treatment and me bursting into tears to persuade him to try steroid treatment. It’s worth a short trial.

[SheffieldJane]

It shouldn’t be like this. Then you get pressurised to come off steroids too quickly as if you are only allowed so much pain relief and you are being greedy wanting more. Enlightened, knowledgeable doctors do not behave like this. There has been Research ( was it Andrew Matthieson.) that shows Prednisalone to be far less harmful on PMR doses than was once supposed.

[PMRpro Ambassador in reply to SheffieldJane]

Eric Matteson ...

[SheffieldJane in reply to PMRpro]

It is astonishing to me that I got as close as I did. Is your post pinned? It is very reassuring about Pred and PMR. Thanks.

[PMRpro Ambassador]

The test is simple: does a week of moderate dose pred improve the symptoms. If it does - it is NOT fibro. I agree with the others, it is a lazy doctor's diagnosis.

Here are 3 links for the good doctor's edification:

uptodate.com/contents/clini...

ncbi.nlm.nih.gov/pubmed/109...

ncbi.nlm.nih.gov/pubmed/904...

onlinelibrary.wiley.com/doi...

In the final paper they found normal ESR levels in a patient who turned out to have a positive temporal artery biopsy. Don't tell me you can't have GCA with a normal ESR.

[Jean56 in reply to PMRpro]

Thank you. I will make sure she has these links and takes hard copy with her to the doctor.