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