Question about remission when you have GCA/LVV+PMR, do they all go away together or in stages?

[Dochaz]

It's early days for me, but planning for better days ahead! When suffering from both GCA/LVV and PMR, do the conditions evolve independently of one another and clear up on different time scales or could they all go into remission simultaneously?

[PMRpro Ambassador]

They aren't really separate disorders - more different points on a spectrum:

academic.oup.com/rheumatolo...

Look at Fig 1 and you can see how the three overlap. Often when PMR is a manifestation it can hang around longer than the GCA itself. LVV is a rather cloudier view - it is relatively new as a concept within the condition and may be found as a sort of incidental when a patient is not doing well while tapering the pred - even when on Actemra/TCZ. There are probably rheumies who aren't really aware of LVV.

Some people don/t realise they have PMR until they reduce their pred dose to a level that isn't enough to manage the symptoms and they appear for the first time. So there can be GCA in its purest form, head only, PMR on its own, and mixtures of 2 or 3 together. And unless everyone had a PET-CT right at the start, before pred, it is pretty difficult to say what might be going on.

[Bluey-1 in reply to PMRpro]

Very interesting and so logical. I have been fretting about this. It’s hard with GCA to read your body and not panic about what else is going on.

[Dochaz in reply to PMRpro]

I was "lucky" in that respect because I had a Petscan before starting treatment. Inflammation showed up in all the main arteries. A biopsy then confirmed the GCA. I had had PMR type symptoms for a few years beforehand without knowing what was going on. I'm keeping my fingers crossed that everything will go into remission at the same time.

[PMRpro Ambassador in reply to Dochaz]

The chances are the underlying autoimmune condition is causing them all and when it burns out, so will everything else. But you never know.

[cycli]

Have to agree with PMR pro. from my experience with GCA and PMR they act both independently and sometime s together. It is hard to know and with a higher dose of pred the individual effects are masked. Every time I have reduced I eventually flared so if i am able to start reducing a fourth time I am hoping that they both will eventually burn out. time will tell. I don't think there is any one predictable way to even guess how they will react.