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PMR and the taper

Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (54)

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@dadcue

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.

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Replies to "Flares are hard to define for PMR. Most people just take more Prednisone for any uptick..."

Thank you Mike for that reflection on "flares". Your story is another example of how very different this disease is for every person and hence the difficulty with treating it. I will keep your words with me as I proceed on the journey. Strangely, in some ways I hope I fail and have "flares" as that is the only way I am able to prove to insurance that I can use a adjuvant such as Kevzara. As a first line defense, the insurance and the medical establishment does not recommend it. But I am sure that that too has its drawbacks. Time will tell. Thanks again. Peter