← Return to PMR - What do you wish you had known . . .

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I wish I had known the time it takes to taper off prednisone and the risks of using it. At first, the relief from the PMR pain is so quick and profound it feels like a miracle. But the side effects are real, rearing their heads like a Medusa shortly after that first wave of pain relief. At one time, I thought if I ever get off prednisone and have another flare, I’d prefer to manage the pain than to revert to prednisone, but with more research I learned doing so increases the risk of GCA and even worse outcomes from the unchecked PMR. It’s a situation with only one path out: prednisone to manage PMR and then the human managing the prednisone for a very long time. Only about 25% of us will walk away from PMR after a ~2-year battle. The rest will continue to live with it, hoping to awake every day flare free, or intercepting a flare early enough to control it with as little prednisone as possible. This disorder is not for the meek, and for me, it takes every ounce self care I can muster to manage it, including the toll on my mental health. As they say, the only way out is through.

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Replies to "I wish I had known the time it takes to taper off prednisone and the risks..."

@kathy22wright
What about kevzara?

@kathy22wright
Thank you. This was very helpful to me. The rheumy couldn’t decide on a Dx because my ssDNA was high, along with ESR, +ANA; c-rp. and the prednisone started causing awful symptoms. I didn’t taper, I simply quit taking it out of ignorance. My PCR who diagnosed PMR originally, is helping me manage this now. I take either 5 mg of prednisone or 2.5 mg when pain flares up - just one or 2 days. It’s been 1.5 yrs and frequent meditation every day seems to help most. Chronic stress of caring for parents in their 90’s seems to be my trigger, and this group has helped keep me sane. It seems that I took so much prednisone for so long, that my blood sugar is totally out of whack. I can handle the pain & stiffness, but this utter exhaustion is my main concern. I am currently doing the AIP diet to see if it helps. I just started the phase where I add 1 food at a time back. 🤞🏻