Interesting info...PMR info

[daworm]

A few years old but some good stuff for people new to this PMR thing..

bpac.org.nz/BPJ/2013/June/p...

[PMRpro Ambassador]

"a daily treatment course of up to three years will be a burden for many people"

Not half the burden untreated PMR for 3 years will be!!!!

[CT-5012]

Useful information, thank you.

[PMRCanada]

Interesting. Now I know why my Rheumy is continuing to rule out seronegative arthritis, and where she gets her tapering scheduling from (sigh). The more info we have about PMR/GCA the better, thanks for sharing daworm!

[Janstr]

Thank you for this. It's very interesting, especially the similarities with RA

[bunnymom]

Glad to see the joint involvement (well not really). My knees hurt yesterday and I thought here I go with something else

Now I consider it part of the package. Thanks

[tangocharlie]

More useful than the information on NHS Choices, but I still feel it plays PMR down, implying that you can cope perfectly adequately without steroids, and also suggesting you can get off steroids very quickly (within a year to 18 months) which we all know is not true. PMR made it impossible for me to work, I felt so ill and was so immobile pre steroids, life was hell. Now I know why I was given so much wrong advice by rheumatologists!

[PMRpro Ambassador in reply to tangocharlie]

Well I did cope with PMR without pred but you wouldn't expect a dog to put up with that level of pain and disability!

[tangocharlie in reply to PMRpro]

Certainly wouldn't want a dog to suffer, I wouldn't wish PMR on my worst enemy. Well maybe the disabled-hating Tory politicians ruining the NHS. BTW I wonder if dogs do get PMR, they get arthritis?

[PMRpro Ambassador in reply to tangocharlie]

Who knows - I know plenty of people whose dogs are on pred though!

[HeronNS]

Quite interesting. I like this article:

emedicine.medscape.com/arti...

[tangocharlie in reply to HeronNS]

Very interesting, thanks HeronNS. Prior to PMR I had frozen shoulders, one after the other, I wonder if there is a connection?

[PMRpro Ambassador in reply to tangocharlie]

Did you really? Or was the early stages of PMR?

[tangocharlie in reply to PMRpro]

it was defo frozen shoulders to begin with, the capsulitis showed on ultrasounds. It was when I read that the frozen shoulders should resolve in about 6 months and it was getting on for a year and a half that I started to wonder what was going on. GP sent me for physio, and the physiotherapist noticed there was something wrong with my knotted trapezoid and neck muscles, but just blamed my poor posture. It's easy to join the dots looking back but it still took few more months before a PMR diagnosis after a throwaway comment, an afterthought after one of many GP sessions, when I said the strange thing was that the pain in my neck and shoulders was worse when I wake up but wore off a lot after a few hours .... 'Aha...' he said, 'I think I know what you've got, take these steroids and if I'm right you'll call me a God'. 48 hours later the steroids were miraculous and I rang the surgery to say 'Tell Dr J he's a God'. He still smiles at that. It took another 3 years to convince rheumatologists that I wasn't too young to have PMR but that's another story......

[HeronNS in reply to tangocharlie]

It might have been the beginnings of PMR, but of course we always look for that "bilateral" manifestation! Right now I have shoulders I have to be careful of, but I'm blaming pred and some myopathy for this, not PMR. The symptoms certainly don't behave like PMR.

[tangocharlie in reply to HeronNS]

I'm told the steroids have actually damaged my shoulders further. I've completely lost all muscle tone in my once strong arms too. Might as well take up Bingo, I have the wings .....

[HeronNS in reply to tangocharlie]

🤣

[daworm]

Before the pred I had ideas of trying anything but the “devils tic tacs”, but that quickly changed after a week of immobility and pain...no way I would go without pred and I’m in no rush to get to zero if it means the PMR is still hanging around...this tapering sucks..feel crappy trying to get down from 10 and I don’t really know if it PMR, adrenals trying to kick in or what, but one must persist!! Plus I take levoxyl for thyroid so who knows what’s going on there...readings (blood) always seem fine...seems like lots of thyroid/PMR interactions with people on this forum...even though I say I feel crappy, truth is I can do just about anything I want to, if it’s too strenuous then I pay for it a few days down the road...the price you pay..just cuz I feel crappy I can’t just sit around..summers been too nice this year here in Michigan...

[PMRpro Ambassador in reply to daworm]

I know a lot of people who say that to feel well they have to be treated as being slightly hypothyroid despite blood readings that suggest all is fine. This presumably is due to the effect of corticosteroids on TSH - which they suppress. So you can have apparently normal TSH levels - but it is due to the pred not to thyroid function being OK.