How does one know when PMR is in remission?

[zag1999]

I understand PMR may or may not go into remission. Once in remission is pred or any medicine require?

[DorsetLady PMRGCAuk volunteer]

Hi,

Short answer - when you reduce to zero Pred, and have no return of symptoms it’s reasonable to expect the disease to have gone into remission. Unfortunately some people think it’s gone, when it hasn’t and then it flares up again. But for the majority it doesn’t.

However, I think it would be a brave person to say it’s gone - gone! Just be pleased it’s gone to sleep!

I had GCA for 5&half years. I have now been off the Pred for 18 months with no return of any symptom, but I’m always aware it could still be lurking - I don’t take for granted I’ll never relapse, but I don’t spend my time worrying about it either!

No medication required!

[DianeA1 in reply to DorsetLady]

Yay!

[Grants148]

Hi zag,l think that if you can come off the preds and feel OK,that is good but l also think that PMA,is still there somewhere in the system and it is best to be aware that it could come back,just make the most of feeling normal again and it should only be necessary to take the preds again if you feel it coming back. I wish you well and hope that it never does.

[Longtimer]

Good question, someone asked me several months ago...if you stay on a certain dose for several months, how do you know it hasn`t burnt itself out...mmmmm.....I wish!

[SnazzyD]

I agree with DL, even when the Pred is stopped and I’m symptom free (nowhere near there yet) I will take the attitude that I’m ok, for now. Same as my cancer from 14 years ago. I will never know if my body will go into panic mode again and start attacking itself, so I will have to ‘tread the Earth lightly’ for ever, hold be worse.

[SnazzyD in reply to SnazzyD]

I meant could be worse, not hold be worse but it won’t let me edit today.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

I’ve found it has days like that, sooo frustrating!

[PMRpro Ambassador]

You know that PMR is in remission when you are able to reduce the dose of pred slowly to zero without the symptoms flaring. And then - no more pred.

However - it isn't cured, the propensity for the autoimmune disorder to return remains. For most people it doesn't, but for a few it can return, sometimes within a few months, sometimes years later. So if you have symptoms - don't be in denial!