Weaning off Pred

[ian1951]

I have been on Pred for 4+years PMR. I got down to 3 or 4 mg quite quickly but seem to be stuck there with symptoms if I go lower...does anyone have any advice how to get off it (exercise/other) I thought it would have burn't itself out by now?

[PMRpro Ambassador]

Just keep trying 1/2mg every so often, preferably with one of the slowed tapers you will find in FAQs if you aren't already doing so.

You are never reducing relentlessly to zero, you are titrating the dose to identify the lowest effective dose for you for the long haul. You have done that - 4mg is a good result. A very very slow taper of the next step may get you down a bit further - or it may not. About half of patients need a low dose like that for more than 6 years. Prof Dasgupta (retired rheumy in England and GCA guru) told us a couple of years ago that he often keeps/kept patients at 2-3mg longterm as it reduces the rate of relapses. Which I take as a tacit admission that PMR lasts far longer than the 2 years that is so often claimed by the medical world - and disputed by patients.

[Suffererc in reply to PMRpro]

I tried telling my GP that and she referred me again to a Rheumatologist for the third time. Glad they are ignoring her cos what a waste of theirs and my time 😊

[PMRpro Ambassador in reply to Suffererc]

Nothing like repeating the same useless action and expecting a different result...

[DorsetLady PMRGCAuk volunteer]

Small steps and a slower tapering plan (if not already) -and PMR will go when it ready …..

See this from FAQs -for variety of plans - healthunlocked.com/pmrgcauk...

[Meggsy]

Maybe try 0.5 titrations. I got stuck at 2.5mg after 0 .5mg tapers from 10mg. I then started cutting 1mg tablet into 4 and have settled at 1mg after 0.25mg titrations plus using slow taper. It’s been 4 1/2 years but as they say, “It’s not slow if it works”. All the best.

[Suffererc]

I am similar but stuck in 2. Think unread it is harder to taper when dose get low. Am taking my time after 3rd attempt to 1.5. Good luck 😊

[agingfeminist]

also edging my way lower...just dropped a quarter of a mg to 3.25...not for the first time.

The thing that puzzles me is why PMR ever goes away... if the immune system becomes over active for some reason why does it ever go into remission and return to normal? It would be great to have an answer to that because then perhaps we could help it on its way.

Hope your PMR does some disappearing magic soon.

[PMRpro Ambassador in reply to agingfeminist]

There's a question! They don't know, it just seems to be a feature of GCA and PMR. There is one form of inflammatory arthritis that comes and goes -but with strange intervals and eventually it has the habit of sticking around. But for some of us it doesn't appear to go away ...