1. < Polymyalgia Rheumatica (PMR)

PMR symptoms are gone. Sharing what worked for me .

Posted by murphy2370 @murphy2370, Mar 25 8:23am

My first symptoms started in September, with minor hip pain, until October when it became debilitating, with shoulder and hip pain combined. My doctor started me on 20 mg prednisone and then added 1000 mg Mycophenolate mofetil . I also completely changed my diet to an anti-inflammatory. My symptoms completely left in the end of February. I haven’t seen my doctor yet, until 1st week of April. I’m so afraid that PMR will return, as soon as the we start the step down process on the prednisone.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 25 3:13pm

Hi @murphy2370, It's good to hear that your PMR symptoms are gone. You mentioned you haven't started tapering off of prednisone yet and are afraid the PMR symptoms will return. You might find the following discussion helpful when you start tapering down on the prednisone.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

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wfroslansky | @wfroslansky | Mar 26 7:45am

You are off to a good start. The tapering may take 6months to a year if things go well. Patience and exercise, and enjoy your best life.

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tuckerp | @tuckerp | Mar 26 8:27am

I have seen so many things that seem to work for one person and not so effective for another. The facebook page I belonged to was mostly keto advocates until they spun off their own group. I believe diet is important. I believe that exercise helped me. Reducing stress helps. I went 3 months without a diagnosis. Then started 20mg of corticosteroids. My wife was on dexamethasone for cancer. I understood the issues with steroids. I went from 20mg to 10mg in the first 2 weeks. 5 months at 10mg and then was able to taper to zero during the last month. Approximately 5 months at 20mg prednisone is a rather long time without a taper. The idea should be to try and find the lowest possible dose. You stay at that dose until you stabilize and then keep trying to reduce. I am sure your April appointment will have this discussion. John has provided some good information.

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1 reply
janiceem | @janiceem | Mar 27 10:01am
In reply to @tuckerp "I have seen so many things that seem to work for one person and not so..." + (show)
@tuckerp

I have seen so many things that seem to work for one person and not so effective for another. The facebook page I belonged to was mostly keto advocates until they spun off their own group. I believe diet is important. I believe that exercise helped me. Reducing stress helps. I went 3 months without a diagnosis. Then started 20mg of corticosteroids. My wife was on dexamethasone for cancer. I understood the issues with steroids. I went from 20mg to 10mg in the first 2 weeks. 5 months at 10mg and then was able to taper to zero during the last month. Approximately 5 months at 20mg prednisone is a rather long time without a taper. The idea should be to try and find the lowest possible dose. You stay at that dose until you stabilize and then keep trying to reduce. I am sure your April appointment will have this discussion. John has provided some good information.

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I agree with you regarding how to taper off prednisone. I had a mild case (only hurt in bed), so it was hard to diagnose. I started at 10 mg. and tried tapering off by 1 mg. every 2 weeks. I found that a .5 mg. taper was more effective and I think sometimes there were 3 to 4 weeks between tapers. I think it was about a year before I was off of it. It did flare when I got COVID, but I only needed 2 mg. and was soon off of it again.

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