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Polymyalgia Rheumatica (PMR) | Last Active: Feb 7, 2023 | Replies (9)
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I am in the process of tapering and am a bit concerned about my last phase (presently on 3 mg). healthunlocked.com recommends no more than 10% decrease each time, down to zero mg. My rhumatologist insists her patients do fine on 1mg decrease every 3 weeks when at 3mg. I'm so afraid of a "flare" so am worried. Anyone have experiences with their final stage of Prednisone taper that you might share?
Replies to "I am in the process of tapering and am a bit concerned about my last phase..."
It is a personal thing. I really like the tapering schedules of healthunlocked.com. So far, it has been working nicely for me. Slow and steady.
The best to you.
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I would say that the 10% is a good idea. However, I think your rheumatologist is also correct that her patients do fine with a 1 mg decrease every 3 weeks.
I worried more about a flare whenever I got below 10 mg. I think 10% at a time is a good idea but when you get below 5 mg, a 10% reduction isn't very much. You would have to cut a 1 mg tablet in half which isn't that easy to do. There isn't a good way to make sure it is actually .5 mg. When at 2.5 mg you would only reduce by .25 mg which gets even harder to do.
My rheumatologist turned things over to an endocrinologist when I got down to 3 mg. An endocrinologist was able to interpret my a.m. cortisol levels and evaluated my associated symptoms. The endocrinologist deferred to my rheumatologist to get my PMR symptoms under control so that I could get down to 3 mg. Those two doctors were communicating with each other.
I was taking another medication that made it easier to taper down to 3 mg. My rheumatologist didn't want me to taper any lower than 3 mg until I saw the endocrinologist.
My cortisol level was low so I needed to stay at 3 mg for a few months. I did some trial tapers by doing a 3 mg-2 mg- 1 mg daily taper and stayed at zero for a day or two before going back to 3 mg again. I would then repeat the 3 mg - 2 mg - 1 mg taper again. It was a slow process but it gave me some confidence that I could come off prednisone.
I reported what I was doing to my endocrinologist. I didn't notice my symptoms were getting worse so my endocrinologist was encouraged that I wouldn't need a maintenance dose of prednisone for the rest of my life.
Eventually, my endocrinologist gave me the green light to stop prednisone when my cortisol level was "adequate." My endocrinologist said to go from 3 mg to zero in one step but I did the 3 mg - 2 mg - 1 mg taper again and was able to get off prednisone for a week.
I should add that my endocrinologist made it clear that I could go back on prednisone for any reason if I felt the need. There was a need when I was off prednisone for a week the first time and I had to go back on prednisone. I ended up being on 10 mg again.
After some adjustments were made, I tried to taper off again. I tapered down by 1 mg every couple of weeks and got off prednisone successfully the second time.