Tapering down advice

[Gervase]

I was first diagnosed with PMR in November 2023. I had classic symptoms of pains in my shoulders, arms , hands and hips. I was put on 15 mg of pred. With rather scanty advice from my GP I was told to taper down over time. My symptoms disappeared and when I tapered down I had no problems. Within 6 months I had stopped taking prednisolone all together.Everything seemed ok for a month or so , then I caught COVID and almost instantly I started getting pains in my knees, fingers and the balls of my feet! I went to the doctor and he said I had tapered too fast and put me back on pred on August 2024. I have been reducing the dose by one mg a month and I am currently on 5mg. However, the pain in my fingers and feet have returned when I went down from 6 to 5mg.

Do I need to increase the dose again back to 6mg or higher? Or might these symptoms just disappear and I can carry on reducing albeit at a slower rate?

[DorsetLady PMRGCAuk volunteer]

Two options - back to 6mg and hope it works [sometimes it does, sometimes it doesn't] - or better still follow the flare protocol as described in this link and the once under control back to 6mg.

healthunlocked.com/pmrgcauk...

As you reduced so quickly last time, your PMR probably never went away, and at some time would have raised its head again, even without Covid. So more slowly this time. 1mg every couple of months - whether that’s in one step, or 2 by cutting the 1mg in half - and maybe using a slower tapering plan - see here for most popular -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

And also some general notes on tapering -

healthunlocked.com/pmrgcauk...

[Gervase in reply to DorsetLady]

Thanks so much for your advice. I'll do as you suggest. Thanks again for taking the time to respond.

[Charlie1boy]

In support of DorsetLady’s suggestion, I would certainly advocate tapering down at a half mg at a time. Wait at least a month, and possibly more between tapers, making sure you have no signs of symptoms returning. It can be VERY slow progress at this stage.

[Gervase in reply to Charlie1boy]

Thank you

[PMRpro Ambassador]

Nothing to add to DL's post so won't bore you. From here on, the slower the better because you need pred for both managing the PMR and for adrenal function cover and it can be a tricky balancing act. The adrenals must now wake up again but that takes time - give them a chance! But PMR really takes precedence - let it wake up too much and it means trouble!!

[Gervase in reply to PMRpro]

Thanks for this. Everyone's saying the slower the better, so will make sure I do from now on