Disease stratification in GCA and PMR: state of the art and future perspectives, published on 12th June 2023 in Nature Reviews, rheumatology

[Dochaz]

I can't access the whole article because I'm not a subscriber, but the abstract is interesting nonetheless

nature.com/articles/s41584-...

[Mayadill]

I haven't accessed the whole thing either. I don't find what I've read easy to relate to, that it's about what I've got. Here's an analogy, possibly a loony analogy, but here goes. It makes it sounds as if I'm in a relationship with GCA when as far as I'm concerned we're just acquaintances - but of course anyone who dug into our family trees would see that in fact we're first cousins.

I did actually look up the following:

PMR occurs in approximately 40 to 50 percent of people with GCA

●GCA occurs in approximately 10 percent of people with PMR

uptodate.com/contents/polym....

90% of us is rather a lot.

WIth so many complex variations here at the forum I have in fact been entertaining myself 'stratifying' my own PMR. Yes, I have PMR(PSP)! Means PMR Plain, i.e. no other systemic conditions and no other medications, and Sufficient Prednisolone.

As diseases go, my PMR (PSP) is non-life-threatening, non-permanent and to me no big deal. That is of course because of the SP. I am not saying my disease is benign. There was nothing benign about my symptoms at onset. Left to itself my PMR is frankly vicious

[PMRpro Ambassador]

Wonder if I can twist Christian Dejaco's arm for a copy ...

[Bcol]

Makes interesting reading, shame we can't access the whole paper.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

£££/€€€/$$$…..

[Bcol in reply to DorsetLady]

👍👍

[Zebedee44]

Thanks for posting this which describes exactly what I seem to have been dealing with. Indeed Rod Hughes confirmed PMR GCA in his letter to my GP after my recent appointment with him.Unlike the dismissive NHS Rheumatologist I saw who stated that I probably never had PMS to start with in 2017, he was reassuring that with a CRP of 1 vasculitis was not evident and that I was doing well to be tapering to 5mg.

I should imagine the new stratification will cover the Covid immunisation and post Covid conditions and we will all come under one “syndrome” .

You might have to change your name, PMRPro 😀

[Viveka]

Very interesting summary, thanks. I like the idea of the spectrum and disease stratification with more personalised treatments. Though we are a long way from that. Hopefully some of the dire rheumys we hear about on the forum will read this.

I developed PMR in December at 3mg when I thought I was on the downward slope from GCA so I am a full spectrum person! Had a difficult few months, but am now feeling good on 3.5 and about to go to 3 with fingers crossed.

[Sharitone]

Somewhat scary!

Large-vessel involvement, peripheral arthritis and synovial hypertrophy in the shoulders are associated with a worse long-term outcome.

And what does that mean?😧

[PMRpro Ambassador in reply to Sharitone]

Patients who have those signs and symptoms do worse - longer need of pred, higher doses and difficulty getting things managed.

[winfong in reply to Sharitone]

Large vessel involvement probably means the aorta and major branches, such as is present in extra-cranial GCA.

Peripheral arthritis means the large joints of the arms and legs - elbows, wrists, knees, ankles.

Synovial hypertrophy is "common in people who have some form of inflammatory arthritis. In these patients, excessive growth of the synovium is part of an abnormal immune response, where the body misidentifies its own natural cartilage as a foreign substance that must be attacked." It results in pain, swelling, tenderness, etc.

Most of which seem to apply to me. 😒

[Sharitone in reply to winfong]

Sorry to hear you have these problems. Would that explain why my knee is now swollen up?

[kp60]

I can't figure out how extra-cranial, LVV is diagnosed? I think I have it but I'm not sure. A simple temporal ultrasound was negative for GCA, but that doesn't eliminate LVV.

[PMRpro Ambassador in reply to kp60]

It would be found with PET-CT before pred is started. And if the temporal ultrasound was done properly, looking at the subclavian and brachial arteries too (under the collarbone and in the armpit respectively) it might be seen if they were affected.

[kp60 in reply to PMRpro]

Thank you...wish my rheumi had known what you know as my ultrasound apparently wasn't done properly, and I'm now post 1 1/2 years completed with prednisone for PMR. So is there a way it is diagnosed for folks like me?

[PMRpro Ambassador in reply to kp60]

Why do you think you have it?

[kp60 in reply to PMRpro]

great question. My veins seem to be popping out more, and I am still so stiff and sore. I guess I'm trying to eliminate LVV as the culprit. Of course that could be a return of PMR, or as one rheumi diagnosed - classic symptoms of RA based on an ultrasound of my hand. My CRP and ESR are once again elevated, but only slightly. All other blood tests for any kind of autoimmune/inflammatory diagnosis are negative. This rheumi told me to go back on Prednisone to see what happens, but when I resisted he prescribed Hydroxocloroquine, and said "but it might take 3-6 months to work"!

NSaids do help so that's how I'm managing the stiffness/pain now, but not a long-term solution.

I guess I am experiencing the dilemma of getting a diagnosis with overlapping inflammatory arthritis type conditions, as well as the trial and error that ensues trying to find the right treatment.

PS: I wasnt clear in my last question of where would there do a PET/CTScan . I meant on my body

[PMRpro Ambassador in reply to kp60]

It would be a whole body scan - it is like a CT scan so would be down to the knees to get the femoral arteries too.

If NSAIDs work it is less likely to be PMR - they rarely help PMR pain.

Veins? Or arteries? In GCA and probably LVV it is arteries that are affected, the region in the vessel wall that is affected isn't present in veins. You also wouldn't see any effects of LVV superficially, the large vessels are the ones leaving the heart and are deep in the trunk.

[Dochaz in reply to kp60]

Hello kp60, I think the only way that LVV can be diagnosed is by Petscan and if you've been on Pred for a long time that would affect the results. One of the experts will know more. Mine was diagnosed by Petscan before I started treatment. But I also have GCA, confirmed by biopsy after the Petscan, and then treatment was started.

[kp60 in reply to Dochaz]

Thank you. Now that I've been off Prednisone for 6 months would PET/CT pick it up, and where would they do the PET/CT scan?

[Dochaz in reply to kp60]

Mine was done at a nearby hospital. I'm afraid I can't answer your other question, but PMRpro will certainly know.

[PMRpro Ambassador in reply to kp60]

Should do and it would be done at your nearest centre with the appropriate scanners. There tends to be a wait time because they are used for cancer diagnosis and obviously that takes precedent.

[darkred]

That has 175 citations, impressive. Would be nice if one could see the whole article.