Was initially diagnosed with PMR in April 2022 only to be told a month later by Rheumatologist that it wasn’t PMR but a nasty viral infection.
Also had long standing shoulder pain now for over 2 years and neck also very stiff.Had shoulder scanned recently shoeing no tests but SASD bursa distended consistent with bursitis.Had steroid injection after scan but pain within the joints remain.It is a constant dull ache from getting out of bed to returning to bed in the evening.Have an office based job and work 3 days a work but really struggling due to the psin.
Can anybody advise where to go next please.Is it worth further blood tests for PMR.Would it be worth having my neck scanned?Any medication tips or creams or oils I could try?Had lots of physio both privately and NHS which hasn’t helped & also had various chiropractor sessions.Am contemplating acupuncture next.Pain is making me miserable and unable to participate in cycling & bowls which I love.
Any help or advice would be greatly appreciated.
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Countybowler
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And on WHAT ground was it "a virus"? piglette was told by her GP it was a virus - a good rheumy scotched that idea.
Having spent all that money on things that don't help PMR, I suggest you spend a bit on a competent rheumy. I don't know where you are in the UK, but if you are within a trip to Chertsey, I would recommend a private appointment with Rod Hughes. He will do F2F for the first and then video/phone appointments if you want follow-up.
Someone will come up with his current contact details I'm sure.
Ah yes - but just because someone is private, it doesn't mean they are better or know about PMR. Many rheumies think it is beneath them, not a proper rheumatological disorder. Had you been on pred? The East Midlands has been a bit of a desert for good PMR doctors in the past.
However, whatever it is, you have SOMETHING that is impairing your quality of life. It MIGHT be a very long post-viral something or other but PMR can also be post-viral. In relatively younger patients it can appear without raised markers. And physio doesn't usually help at all, in fact, it can make it worse. You have bursitis - and that is a feature of PMR.
Rheumy put me on dose of 15mg pred but after 2nd set of blood tests showed inflammation markers had returned to normal levels he told me taper from 15 after a month to 10 for a month and then 5 for a month.I just want to know what’s going on as it is having a big impact on my life and making me miserable.
Rheumy put me on dose of 15mg pred but after 2nd set of blood tests showed inflammation markers had returned to normal levels he told me taper from 15 after a month to 10 for a month and then 5 for a month.
Well of course they returned to a more normal levels - that shows the Pred is doing what it is supposed to, and is a sign that it is PMR, not that it isn’t… Not sure what guidelines he was following…
You do need to see someone who actually knows about PMR - previous Rheumy obviously hasn’t got a clue…
We don’t keep a list private Rheumies - but if you set up a new post asking for recommendations and stating roughly how far you are prepared to travel hopefully you should get replies…
.. and always worth getting inflammatory markers checked, gives you an idea of where they are, and new Rheumy if you can find one.
Hi Countybowler. Good advice here. Strikes me you have been here long enough to realise that some rheumy's are not only unprofessional but wrong and their advice can sometimes be dangerous. I suggest you change the rheumy. I'm tired of hearing of frozen shoulder and other stabs at diagnosis. By now you probably know as much or more than some professionals. You can't just stop pred after all this time and you might need more than you take at present. Good luck
You poor thing. It amazes me how doctors leave patients in awful pain for no good reason and don’t seem to make any effort to help. All we can do is get a second opinion.
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