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New to the group. 63 year old male. Diagnosed in April 2025, started Prednisone on May 4, 2025. Just started my tapering from the original 15 mg to 12.5 mg. Spent a month on the original 15 and became pain free over that month of 15 mg. Woke this morning (day 2 of 12.5 ) to stiff shoulders with some light pain. My question is what constitutes a "flare up"? Nobody (including my Dr and ex-patients that I know) can tell me what just constitutes a flair up. How bad does the pain have to be to consider it a flare and to then go back to the previous lowest dose that dealt with it? Does the pain have to be completely gone? 1/2 as bad as the original pain? full on "original pain"? I am very in tune with my body and notice pretty much everything that goes on. Even the area that I had surgery on my hand last October is a kind of barometer for when pain is "up" . That hand gets stiffer. In addition, my dreams become more nightmare-oriented when I am entering into pain. Just how much pain should one expect to deal with when dropping to a lower dose? Thanks for any help that can be sent my way.
Replies to "New to the group. 63 year old male. Diagnosed in April 2025, started Prednisone on May..."
It's quite common to have some slight pain or aches after a reduction, and if it's not a flare, it should reduce or be gone in 7-10 days. A flare doesn't settle and the aches turn in to persistent pain which gradually (or quickly for some people) increases. My doctor considers a flare to be pain which does not resolve and increases, along with an increase in inflammation. You may be just having reduction aches.
As suggested by @johnbishop , it's very useful to keep a daily log of pain from 1-10. Aches from reductions for me never really went above 1/10. The one flare I had last year got to 5-6/10 pain and blood tests showed inflammation had risen, so it was time to increase the prednisolone dose. Since resuming the reduction, I'm at 3.5mg with no further flares. In my opinion, if you can avoid adding another drug that comes its own new side effects, all the better.
Give it a week. I experienced light pain along the way sometimes for a few weeks after a reduction. Keep working on your range of motion, maybe take a Tylenol and be patient.
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Flares are hard to define for PMR. Most people just take more Prednisone for any uptick in pain and call it a flare. I never liked the "flare" terminology because I was never sure what it was. I would simply describe the pain I had which was all the time. I had more pain some days than other days but there was always some pain. The concept of "no pain" was somewhat foreign to me after I was diagnosed with my first autoimmune condition. PMR wasn't my first.
My rheumatologist never referred to flares either. She just wanted to know how much pain I had and checked my inflammation markers to correlate lab values with my pain. She didn't even refer to my condition as PMR very often. Maybe that was because I had multiple autoimmune conditions. She referred to everything as "systemic inflammation with "chronic pain." Her biggest concern was always how much Prednisone I was taking and tried everything she could think of to see if I could reduce my overall cumulative dose without ever expecting me to taper off completely. Maybe that was why i was on Prednisone for 12 years. before I could taper off. My rheumatologist now says I have "refractory PMR." I'm currently being treated with a long term biologic instead of long term Prednisone.
https://www.the-rheumatologist.org/article/how-to-treat-refractory-polymyalgia-rheumatica/
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Once I had an acute onset of excruciating pain. If that wasn't a flare I don't know what was. I must have taken close to 100 mg of Prednisone in 24 hours. I didn't know what else to do. The pain was in my lower back and radiated down my leg to my foot. The large dose of Prednisone relieved the pain so I was thinking it was a flare. I ended up getting an MRI which showed that I had severe spinal stenosis. My rheumatologist said I shouldn't have taken such a large dose of Prednisone. She would have recommended a localized steroid injection instead of systemic oral Prednisone.