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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)
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@canpr

I came to this site because I have no support whatsoever while dealing with Polymyalgia. Other than what I was told on the Mayo Clinic site, and taking the Prednisone prescribed, I have wondered if I am the only one out there. Reading a few of the comments here, I already know many people are dealing with PR. I was told to go on the AIP protocol diet, which is very restrictive. I tried it, but could not find half the foods it suggested that I eat. Now I read that the Mediterranean Diet is the best for people with auto-immune diseases. I know that tomatoes and potatoes can send me into pain. So now it is the Mediterranean Diet with restrictions. I have come down from 40 mg of Prednisone to 6 mg in 15 months, with occasional flare-ups. As I start this 6mg schedule for the next 6 weeks, I am praying that all will go well. I will keep checking this site for encouragement.

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Replies to "I came to this site because I have no support whatsoever while dealing with Polymyalgia. Other..."
John, Volunteer Mentor | @johnbishop | Apr 11, 2021

Hi @canpr, Welcome to Mayo Clinic Connect. I can't imagine dealing with PMR with no support. That takes me back to when I first experienced PMR and finally was sent to a rheumatologist who diagnosed me. My wife had to drive me to the appointment in the morning and I had a follow up the same day in the afternoon. We picked up the prednisone after the morning appointment and I took my first 20 mg tablet and was feeling no pain by the time I went to my afternoon follow up. I didn't start looking at diet to help with my autoimmune conditions until after I was diagnosed with small fiber peripheral neuropathy in 2016. That led me to doing some research on nutrition to help with my autoimmune condition after reading Dr. Terry Wahls book The Wahls Protocol.

I pretty much cut out all fast foods, most processed foods and sugar which I still have not totally eliminated. I found the following article which helped me do a little better planning on what I can eat and what I should avoid.
What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

You are doing great tapering off of prednisone. I was never any higher than 20 mg for both occurrences of PMR but each of us are different. One of the things that helped me taper off of prednisone was keeping a daily pain/dosage log, recording how I felt with the pain from a 1 to 10 along with the dosage of prednisone. This also helped me when I had a second round with PMR. If you haven't already requested that your doctor prescribe 2.5 mg tablets and 1 mg tablets, I would discuss it with your rheumatologist or doctor. It makes it much easier to go down slower in dosage.

Did your doctor give you any suggestions for a tapering schedule?

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