pmr check my understanding

[Excelsior80]

hi, im lucky so far, sudden dramatic start in spring 2024, but no pain once steroids started and tapering also ok so far.) - I realise its early days - just 5 months on pred... reading other peoples situations is so helpful getting to grips with this .... and careful advice also or I'd be tempted to behave as normal, but now I'm taking care to rest and generally do less 🙂Am I right to say my immune system would be attacking my blood vessels if not subdued by prednisolone? And it should eventually stop by itself but can take ages? Is there any way to tell what caused the original problem? Also, say I reach a dose that I can't reduce without symptoms, is it then trial and error finding out if the pmr has finally gone by trying a small reduction from time to time?

thank you!

[DorsetLady PMRGCAuk volunteer]

Not sure if I sent this to you previously - but even if I have, sometimes it helps to read again, when have got your around initial diagnosis - hopefully should answer some of your questions -

healthunlocked.com/pmrgcauk...

As for what caused it initially - the 64 million dollar question - generally an immune system under stress for a variety of reasons... finally giving up the ghost.

If you cannot reduce without symptoms then your PMR hasn't gone... which is why we spend almost every day say - slow tapering, small steps, certainly as you get lower.

[Excelsior80 in reply to DorsetLady]

brilliant thank you 🙂 ... I think you may have and its me having trouble absorbing so much information ... . I didnt originally realise that its blood vessels in both pmr and gca. Would inflamed blood vessels show up on any imaging system? eg ultrasound or MRI?

[PMRpro Ambassador in reply to Excelsior80]

Inflamed arteries show up for GCA with ultrasound and PET-CT. I think some sorts of MRI show it too. PMR is a bit different - can't see the individual blood vessels but the tissues that are inflammed will show up on PET-CT and ultrasound will show shoulder inflammation.

[DorsetLady PMRGCAuk volunteer in reply to Excelsior80]

There is alot to take in initially I know, which is why I suggest keeping it and re-reading at a later date.

PMRpro has replied re scans etc... much more knowledgeable than me on those...

[PMRpro Ambassador]

In order: Yes, yes, no and, basically, yes.

If we knew what had caused it, then we would be a long way on the path to finding a cure.

[Excelsior80 in reply to PMRpro]

succinct! many thanks

[PMRpro Ambassador in reply to Excelsior80]

[AtopicGuy]

Roughly 45% of GCA sufferers also develop PMR symptoms. About 15% of PMR patients subsequently develop GCA. This - and the fact that both respond well to corticosteroids - is strong evidence that they have the same root cause: autoimmune vasculitis. PMR responds to lower doses of prednisolone because the inflammation of the blood vessels is milder and more diffuse. This makes PMR much harder to image during scans than GCA.

[PoolePerson]

Cant really add much except to say reduce prednisolone at snail pace, that worked for me the second time of trying! Two years from 10 to 0.