How do I know when PMR is gone?

[Juebates]

I was diagnosed in May 2019 and started on 15mg pred. Down to5 now, up from 4 after recent relapse. My question is how do I know when it’s gone? Am I just trying to kick start my adrenal gland or am I still I’ll? Sounds a simple ask but I can’t find the answer anywhere. I’m new here

[DorsetLady PMRGCAuk volunteer]

Hi,

Simple answer - if you are having flares then your illness is still active.

Another simple answer - when you’ve got down to zero and have NO return of symptoms then you can assume your illness has gone into remission.

At the level you’re at, your Adrenal may be trying to kick start but that’s not the whole story.

Not sure if you’ve been told how long your illness will last - but it’s anywhere between 2-6 years. So you can see, you’ve got some way to go even if you are one of the lucky ones that goes into remission within 2 years.

This might give you info you haven’t found anywhere else - healthunlocked.com/pmrgcauk...

Can you put a bit more info on your profile please - particularly country - protocol and medication names vary. Makes it easier to answer.

[Juebates in reply to DorsetLady]

Thank you that’s helpful, I’ll try and update my profile as well. I’m new to this bear with me.

[DorsetLady PMRGCAuk volunteer in reply to Juebates]

That’s great thank you. It just reminds us of your overall situation when you ask a question

[PMRpro Ambassador]

The relapse wasn't what you usually think of as a relapse - it was a return of symptoms because you had reduced the dose of pred you were taking to a level where it was no longer enough to manage the daily new batch of inflammatory substances shed every early morning about 4am. That will continue as long as the underlying autoimmune disorder that creates the inflammation that causes the symptoms continues tp be active. For half of us that is up to just under 6 years - about 20% get of pred in a year, by 2 years it is a third of patients.

The only way you know it has gone is when you get to zero pred and the symptoms don't flare up. Even 1mg/day may be enough to manage the inflammation - but stop it and the symptoms may return within weeks or a few months. There is no other way to find out. You just continue reducing the dose very slowly and see where you get to.

[Juebates in reply to PMRpro]

Makes perfect sense, so I’m still ill, I just need to get stable and reduce in smaller increments. Thank you.

[piglette]

You really do not know you are in remission until you stop taking steroids and you feel OK.

[Juebates]

Thank you

[tangocharlie]

Given that Dr Dasgupta keeps his patients on a low dose for a long time, woul it be fair to say you know PMR has gone or 'you're in remission' if you get to a very low dose for a long time and feel great with no flare-ups? That's my assumption but I don't know.

[Telian in reply to tangocharlie]

Prof D said my PMR was in remission and thought the GCA was too. He said I’d probably stay on a low dose for life. I stayed on 3mg for 18 months and began to feel normal again. I then had a flare - came out of nowhere. Since then I’ve had to increase pred to 20mg and now on 10mg as couldn’t reduce further. Am awaiting results of PET scan and bloods.. Only just hanging in there pain free from both illnesses.