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Prednisone tapering is challenging. What does remission feel like?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)Comment receiving replies
Hi Sandi, I recall being anxious and wanting to taper quickly and wishing the PMR would be cured. I hope your journey is quick. Mine has not been unfortunately . I tapered to 8 mg within a year, I started getting GCA symptoms. I had to ramp up to 40 mg, then tapered quickly to 25, then the slow process again. Once again this past January I had another relapse with excessive, unrelenting PMR back/ hip pain. Back up to 40, then more swiftly to 15 ( within a month). I’ve been tapering VERY slowly since then. Now at 5 but having some difficulty so holding tight at this level.
I’ve had a roller coaster experience, and not sure if it’s typical or not.
Given the new symptoms of numbness in my leg/ foot I’m really thinking it’s a pinched nerve/ some of my lumbar stenosis showing itself. Again hoping your journey is shorter than mine.
Replies to "Hi Sandi, I recall being anxious and wanting to taper quickly and wishing the PMR would..."
Thanks so much for your response @karinaph. I have had a difficult time getting below 17.5. Every time I have gotten to 15, my hip & shoulder pain has come back hard and I have had to increase to 17.5. I also have Degenerative disc disease and had my nerves burned out in my lumbar spine last year. It apparently worked much better than we realized but the pain has returned with a vengeance over the past month. I am trying to have a repeat scheduled by the end of the month so that hopefully back pain will be quiet again. I am also scheduled to start on Kevzara (the new medication approved to treat PMR) in the coming week and hopefully that will help me to reduce the prednisone. Very thankful for this group and the prospective that I get from others so thanks so much for taking the time to share your journey. I hope that we are all on our way to remission soon. Blessings!
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I was diagnosed with GCA in 2019....and it IS a roller coaster. Sometimes it is just our bodies and other times I have found when I feel really good and do more then I am whipped. Sooner or later all those hills and valleys even out. I'm presently on 3 mg and Actemra. Since I plan a trip to my granddaughter's graduation, I'm going to hold at 3mg along with Actemra, until I return.
I also have neuropathy and it isn't getting any better...it is a beast that we have to just do our best with, slowly.💞