How do I know when in remission?

[WaltzG]

I have PMR and GCA. Wondering how we know if in remission? All treatments suppress markers so control don't cure. Do we simply come off medications and see if feel OK? and keep an eye on markers? Thx

[SheffieldJane]

I think you are right with how you feel in yourself being more important initially, than the blood markers. I am imagining that there is a period of rehabilitation where you still have to take it easy. Not there yet.

[WaltzG in reply to SheffieldJane]

Thx for reply

[DorsetLady PMRGCAuk volunteer]

You won't know for sure until you have been off the Pred for best part of 6 months and no return of symptoms. That time is about how long it can take for inflammation [sometimes much quicker] to build up again and cause problem if your illness is not in remission.

Just coming off pred is not a good idea, you need to taper even more slowly at low doses - and as many have found 1mg - even 0.5mg can keep things under control. Markers are not the be all and end all some think, they can lag well behind symptoms, and some ppatientsnst never have raised ones anyway.

[WaltzG in reply to DorsetLady]

Many thanks

[PMRpro Ambassador]

You get to zero pred for at least 6 months without a return of symptoms. And those later stages can't be rushed - because not only can 1/2mg a day be enough to keep the inflammation due to low disease activity under wraps, but your adrenal function has to wake up and take over from the pred in supplying corticosteroid for your body to function. I know several who got off pred only for symptoms to reappear a few months later as that tiny bit of daily inflammation builds up to a level that is enough to notice. If you acknowledge it quickly, you may get away with going back to 1mg but leave it and let it build up and it is more difficult.

[WaltzG in reply to PMRpro]

Thanks ....and if on alternative meds (ie MTX and TCZ) assume same applies ie 6 months without return of symptoms?

[PMRpro Ambassador in reply to WaltzG]

Difficult to say - neither of them do any more than the pred, they are just steroid sparers, even the TCZ does nothing about the disease process which is why the relapse rate is pretty high. There is no set duration of PMR or GCA - whatever some doctors may think.

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

If you're basing it on inflammation building up...but as I said some note a return of symptoms earlier than 6 months... like most things - individual.

[WaltzG in reply to DorsetLady]

Thx guess I'll wait and see 👀

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

All you can do… fingers crossed

[WaltzG in reply to DorsetLady]

For all of us !! X