Perspectives and unmet needs in polymyalgia rheu... - PMRGCAuk

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Perspectives and unmet needs in polymyalgia rheumatica - a basic framework for new approaches

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reumatismo.org/index.php/re...

Prof Sarah Mackie sent me this link a few days ago - I thought others might like to read it too. It IS a heavy read I'm afraid but does show the problems faced in diagnosing PMR - but also talks about a range of things patients have been saying about PMR for some time and about which we still meet denial on the part of doctors.

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Just breezed through a couple of things at moment. Defo had tenosynovitis in my bicep the year before diagnosis. But Dr said probably pulled it. Transferring to tablet!

jinasc profile image
jinasc

Printed it off.............I saw this post after your t'other one. Will read etc.

Louisepenygraig profile image
Louisepenygraig

It does look long, and small print on my phone so I'm saving it for later. Thank you for sharing it.

scats profile image
scats

I read somewhere that ultra sound will be getting cheaper as they have now developed one that can be powered by a mobile phone. With luck, in a few years every GP surgery should be able to have one. Then it was shown on our local news being trialed at Southampton hospital.

PMRpro profile image
PMRproAmbassador in reply to scats

Ah yes - but for diagnostic purposes here they need top of the range equipment used by highly skilled operatives that can measure things. There are already mobile phone sized ones that are in use on ambulances but they are only much use to identify bleeding, collapsed lungs and the like. And GPs aren't likely to have the skills - for any particular diagnostic u/s if you don't do it regularly you lose the touch!

scats profile image
scats in reply to PMRpro

Of course I forgot that aspect of it although I was imagining a trained nurse/technician using it rather tha GP.

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PMRproAmbassador in reply to scats

Even then you have someone who specialises in vascular u/s who wouldn't have a clue about gynae or liver or whatever. It isn't all as clear as a baby ;)

scats profile image
scats in reply to PMRpro

It's never that easy is it.

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PMRproAmbassador in reply to scats

Shame but no!!

MamaBeagle profile image
MamaBeagle

Never ever had any shoulder or neck involvement! From my reading of this it seems this is crucial for diagnosis am I reading correctly?

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

It appears to be according to some people. What really is the case in the medical literature is either shoulder or hip or both. Which is the reason for my other thread.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

Will read that one next, thanx Pro.

IslandRN profile image
IslandRN

My presentation was bilateral upper leg stiffness for about 2 weeks with difficulty getting out of chair/car, etc...however would improve after walking until I literally woke up one morning with horrific bilateral shoulder/upper arm stiffness, inability to turn my neck hardly able to walk as upper legs were like concrete, unable to sit on toilet or lift my arms higher than waist and no improvement with pain pills, muscle relaxers, ibuprofen, hot packs, ice, acupuncture, massage or physical therapy. The physical therapist is the one that stated he believed my issue was inflammation and central not peripheral however was not sure exactly what was going on but did not want to strain my muscles until the inflammation was under control (thankful for this as I know I could have sustained some damage/tears). Lost 7 pounds in 10 days and was unable to get out of my condo 5 of 14 days as could not walk up and down a step. Suffered for 17 days and had hip X-ray revealing bilateral moderate osteoarthritis however doctor knew it wasn't cause of my symptoms so started me on a steroid dose pack. I was 70% better within 36 hours but symptoms quickly returned as I got to the end of the dose pack thereby confirming PMR and the need for long term prednisone. I did develop bilateral wrist pain about 15 days in and at first thought it from not being able to use my upper arms much however since learned its not uncommon for PRM to affect the wrists despite not often listed as an area of pain.

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