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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Hello - I have had PMR for 6 years - diagnosed the year I turned 70 - after a few bumps and bruises, I was put on a dose of prednisone and followed the doctor's tapering schedule - a little too fast it seems, as I yo yo'd for a pretty good while - finally found a forum (from the UK) where I could go to see what others were experiencing and learned so much valuable info for me - had a few flares - sure don't want another - I am on a dose of 5 mg of Prednisone per day - and rheumatologist asked me to try to drop to 4 mg per day - I have found the DSNS method to be the best for my tapering, and think reducing by .5 mg per day is better for me - I have been using the 5 - to 4.5 method, but I am now having night sweats, feeling very sluggish, really fatigued, and just losing my sparkle - as I believe this is not a race, but rather trying to find the lowest possible dose to be comfortable, I wonder what y'all think - thank you so much
Replies to "Hello - I have had PMR for 6 years - diagnosed the year I turned 70..."
Hi. I'm two years in and also a fan of the UK forum. What I think: the disease dictates my taper; not the doctors or a prescribed plan. And yes, the objective is not a relentless drive to zero prednisone (though I'd welcome that), but to find the place where we can be reasonably comfortable. Don't lose your sparkle 🙂 You may need to remain at 5 for a time and then try again. Best to you.
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I had my initial episode of PMR thirteen years ago in 2008. It lasted six months and I had no further problems with PMR until I received my first Covid vaccination in January 2021, when my symptoms suddenly returned with a vengeance and I was unable to function without assistance. With the help of a skilled rheumatologist, I slowly regained my health and was able to begin tapering the prednisone. The doctor provided a schedule for me to follow for a three-month regimen of decreasing the prednisone until I was finally able to discontinue the drug after a bout of six months. Everyone's journey is different and the treatment must be individualized by an experienced physician. I hope you find the right dosage for your case and are feeling better soon.