An Update on PMR - a useful summary for reference - PMRGCAuk

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An Update on PMR - a useful summary for reference

PMRpro profile image
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39 Replies

onlinelibrary.wiley.com/doi...

It comes from Sweden, where there is probably more PMR than most other places so they should know their stuff! There are some particularly good comments about duration of PMR with the relevant references which often asked about. A good one to keep handy I think.

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39 Replies
Pastamama profile image
Pastamama

Brilliant link , thank you so much

Understanding22 profile image
Understanding22 in reply toPastamama

Can you remind me of the link please?

PMRpro profile image
PMRproAmbassador in reply toUnderstanding22

It is in the original post further up the page ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toUnderstanding22

The one is PMRpro’s reply?

onlinelibrary.wiley.com/doi...

yogabonnie profile image
yogabonnie

Thanks very good!!

glad we get to live as long as everyone else!

Charlie1boy profile image
Charlie1boy

A very interesting read, though, not surprisingly, I didn’t understand lots of the medical terms.

Thank you for posting it.

Paddy

pata63 profile image
pata63

Great link thanks. 👍 Nice overview, and great to have the review of imaging techniques, plus specificity and sensitivity levels for different diagnostic techniques.

Jackoh profile image
Jackoh

Thanks for this. Have saved it for reference.

Daffodilia profile image
Daffodilia

mmm - another one that says clears up in couple of years usually

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDaffodilia

It may say that, but then goes on to say following -

There are no validated guidelines on the optimal duration of GC therapy in PMR and data available in studies are not consistent. In a study by Healey, only 30% of patients were able to stop GC therapy and remain asymptomatic within 2 years of follow-up while only 2% were able to stop GC completely within 6 months [54]. In a meta-analysis by Floris et al. including 21 studies eligible for analysis, 77%, 51% and 25% were still on GC after 1, 2 and 5 years from diagnosis [75].

Miacaro45 profile image
Miacaro45

An excellent study one that I will pass on to my rheumatologist. Thanks

Bedwell profile image
Bedwell

Thanks for that. Good for reference. As I struggle to reduce from 2 to 1.5!!!

Waves2 profile image
Waves2

Very interesting. Thank you for posting.

Megams profile image
Megams

~Wow - how enlightening as always PMRpro - thank you for sharing and have saved ~

123-go profile image
123-go

Useful addition to my PMR/GCA folder- thank you.

I do wish that ‘stiffness’ would be elaborated on in this type of paper. In my case, and I know I’m not alone, ‘severe pain’ or even ‘excruciating pain’ before prednisolone would be more appropriate.

PMRpro profile image
PMRproAmbassador in reply to123-go

I know - and doctors seem unwilling to grasp that PMR is darned painful for many, Stiffness I can deal with but pain in every movement of a certain type is a whole different matter.

readingbooks profile image
readingbooks in reply to123-go

Indeed ! I also squirm any time I read stiffness and aching in describing PMR. Excruciatingly painful was certainly my experience .

Zebedee44 profile image
Zebedee44

Thankyou for posting this paper, in which I have to admit I didn’t fully understand the terminology. It gives me hope that PMR/GCA is constantly under review by many teams with growing understanding. Sadly there are far too many doctors and rheumatologists in the World who don’t keep up with current thinking and practice.

PMRpro profile image
PMRproAmbassador in reply toZebedee44

And some who think they do but appear to have lost sight of the real aim.

Jayneywales profile image
Jayneywales

thank you very much for posting. An interesting read. As a person with ‘co-mornidities’ of a string of other autoimmune challenges including hypothyroidism who first experienced pain and general unwellness after the Covid and flu jabs in Oct 22, glad to see the link is acknowledged.

PMRpro profile image
PMRproAmbassador in reply toJayneywales

The Covid 22 jab was the bivalent one wasn't it? There was definitely something about that one. I was fine with the autumn 23 one, not even a sore arm.

Jayneywales profile image
Jayneywales in reply toPMRpro

Me too re 23 - both flu and Covid. Rheumy warned that might not raise the same immune response if on Pred but decided to go ahead in any event.

PMRpro profile image
PMRproAmbassador in reply toJayneywales

Been on pred all the way through, had all the jabs offered here (far fewer than the UK it has to be said) and haven't knowingly had Covid. That will do me!

I think the pred-effect was probably with the first two - and once you have got into the booster track, it all catches up.

Jayneywales profile image
Jayneywales in reply toPMRpro

Good for you! 👍 Managed to catch Covid in mid March last year before diagnoses in May/June and things just went bonkers on PMR front from there on in when I look back. Just tipped my immune system completely over the edge!

PMRpro profile image
PMRproAmbassador in reply toJayneywales

Long Covid and PMR can be very alike. And covid can trigger sutoimmune disorders.

tangocharlie profile image
tangocharlie in reply toPMRpro

This is what I am trying to tell a friend of mine who has been told she has ''long Covid'. To me it sounds very much like PMR or something else autoimmune. Yet the 'long Covid' doctor hasn't mentioned anything. She's in a very sorry state. I think a referral to a rheumatologist is in order

PMRpro profile image
PMRproAmbassador in reply totangocharlie

They are beginning to "get" that LC is an autoimmune response to Covid. As I said from the moment it was mentioned. I get very upset at the complaints LC is being ignored when actually FAR more has already been done relating to it than in all the years PMR has caused similar diability. The only difference is that it is affecting younger people. And LC is now said to have messed up mitochondria - which I sus[ect is at least part of the problem in PMR>

tangocharlie profile image
tangocharlie in reply toPMRpro

But all the LC ones I've come across in Leeds are just assumed to have something like the old ME and told exercise and pacing is the solution. And as they're generally young and never been ill before they accept what they're being told, whilst being in agony and floored by fatigue, now run out of sick leave and getting stressed about it, then put on mental health med for the anxiety. It's like we're back in the 19th century and quacks handing out snake oil

PMRpro profile image
PMRproAmbassador in reply totangocharlie

New work has established the mitochondrial connection - and they KNOW everywhere that exercise and pacing is the WORST thing you can do for ME/CFS and it has been banned. Who on earth is running the programme in Leeds?

tangocharlie profile image
tangocharlie in reply toPMRpro

My friend is totally confused and in a very sad and sorry state. She's been told it's long Covid but doesn't seem to be getting any help, just told it will go away eventually. But I say if it IS now something rheumatological that's been triggered it won't and she needs referring for a 2nd opinion. I haven't read up anything on LC so have no idea what % of people eventually get better and who don't. My suspican is there are people out there with things like PMR adn other thngs under the illusion they have LC

PMRpro profile image
PMRproAmbassador in reply totangocharlie

More than likely - but I thought that people were being diagnosed with PMR and it was shoving the numbers up.

tangocharlie profile image
tangocharlie in reply toPMRpro

Exactly, some of her symptoms, pain and stiffnes and fatigue point at PMR, but bloods also show something going on she says, she's an ex-nurse so knows enough to query things but not getting anywhere

PMRpro profile image
PMRproAmbassador in reply totangocharlie

medscape.com/viewarticle/st...

It is the immune ssytem in the vast majority. Not sure it is all complement - but immunosuppressants would be a good place to start and a course of pred wouldn't harm to sort sheep from goats ...

tangocharlie profile image
tangocharlie in reply toPMRpro

Like you say, I wish as much effort was going into trying to understand PMR, but maybe some of the findings will rub off on us

PMRpro profile image
PMRproAmbassador in reply totangocharlie

Not if they aren't getting their brains in gear on the basis of existing knowledge.

tangocharlie profile image
tangocharlie in reply toPMRpro

Then we're all doomed Captain Mainwaring 😱

PMRpro profile image
PMRproAmbassador in reply totangocharlie

Don't panic ...

tangocharlie profile image
tangocharlie in reply toPMRpro

😆😆😆

Bella59 profile image
Bella59

Thanks for this link i found it interesting.Some of it went over my head but i understood some of what was in this paper.I myself have RA, Polymyalgia and Hypothyroidism.

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