1. < Polymyalgia Rheumatica (PMR)

Prednisone Taper

Posted by rnm @rnm, 2 days ago

I was recently diagnosed with PMR. I’ve been on 10 mg of prednisone for two weeks. My rheumatologist suggested that I taper down to 5 mg. Beginning today. My internist suggested that I taper more slowly down to 8 mg. I’m just wondering what the experience of other group members might be. thank you.

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tnnanahjoy | @tnnanahjoy | 1 day ago
In reply to @jeff97 "I have several comments about your post. 10 mg is a low starting dose for PMR...." + (show)
@jeff97

I have several comments about your post. 10 mg is a low starting dose for PMR. My understanding is that the normal starting dose is between 15 and 25 mg, but some websites say the dose can start as low as 8 mg. Is the 10 mg dose controlling your PMR? Are you pain free?

If you do a web search on how long people with PMR stay on prednisone, the results indicate 1-2 years is the normal course. Some people take longer, and some people never get off of prednisone. 2 weeks seems like a really short period of time before starting to taper. I have PMR and GCA, and I was on the starting dose of 60 mg a day of prednisone for 6 weeks before starting to taper.

To me it seems pretty risky to start tapering so soon.

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I totally agree with the above, two weeks is nothing and 10 mg is not an accurate starting dose. Maybe the diagnosis is incorrect, but certainly the treatment is not correct. I can guarantee you. I would definitely seek out a second opinion most people have PMR for at last one to two years and much higher dose to start to really control the symptoms. I was diagnosed when I was 54. I’m now 66 and have juststarted KevZara. And I’ve been on 20 mg of prednisone for years tried to taper. The lowest I’ve ever gotten is 15 mg and now with the Kev Zara I’m trying to taper again been on KevZara for two months and a 17.5 mg and will only taper 1 mg at a time. Tapering faster than that can be very dangerous.

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barb26 | @barb26 | 23 hours ago

Confused. Are we to be taking doses of prednisone to be pain free or are we taking the amount that allows pain that is tolerable? I am tapering but never have felt totally pain free since onset of PMR in mid-May 2024. ROM is greatly improved so I know I am moving in the right direction.

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1 reply
jeff97 | @jeff97 | 21 hours ago
In reply to @barb26 "Confused. Are we to be taking doses of prednisone to be pain free or are we..." + (show)
@barb26

Confused. Are we to be taking doses of prednisone to be pain free or are we taking the amount that allows pain that is tolerable? I am tapering but never have felt totally pain free since onset of PMR in mid-May 2024. ROM is greatly improved so I know I am moving in the right direction.

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I have personally been pain free since I started treatment 8 months ago. My quality of life is hugely improved over the time I had PMR and GCA. I'm not sure why you would choose to not be pain free, or at least pain free from the PMR. If you have pain from PMR or GCA, that means you have active inflammation, and I don't think that's good for your health.

But I only know my own case. Maybe having pain is normal for PMR and/or GCA.

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lindaadele | @lindaadele | 21 hours ago

I was diagnosed with PMR April 2023 . For me there is no magic formula sometimes a certain dose works and sometimes the same dose doesn’t work it changes all the time I think if I went to 10 different doctors they would all have a different formula for me . This is very difficult for me because we all act so differently to the same medication’s including me! Best of luck to you going forward!!!

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asa | @asa | 21 hours ago

@rnm, I was diagnosed with GCA/PMR from 2018 to 2021 and then experienced a relapse of GCA starting in 2024, which continues to the present. One of the BIG mistakes I made early on was not communicating my pain to the Rheumatologist. If I could tolerate the pain, I basically said nothing. As a result, the Rheumatologist assumed I was pain-free and recommended taking the next step in the taper. However, that approach doesn't work with PMR or GCA. If you have pain, the Rheumatologist needs to know, and they need to know NOW. Take the time to leave a voice mail or send an email to the Rheumatologist.
I wish you the best of luck.
Asa

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