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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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Mike | @dadcue | Dec 30, 2025
In reply to @caroljeand "@dadcue Great information… thanks!!" + (show)
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@dadcue
Great information… thanks!!

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@caroljeand

Medicare Part B pays 80% and with one of the better supplements ...100% of the cost of an Actemra infusion should be paid. I'm not sure how the Advantage Plans cover the cost.

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caroljeand | @caroljeand | Dec 30, 2025
In reply to @dadcue "@caroljeand Medicare Part B pays 80% and with one of the better supplements ...100% of the..." + (show)
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@caroljeand

Medicare Part B pays 80% and with one of the better supplements ...100% of the cost of an Actemra infusion should be paid. I'm not sure how the Advantage Plans cover the cost.

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@dadcue
I have Medicare advantage so I guess we’ll see.

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sharon44r | @sharon44r | Dec 31, 2025
In reply to @caroljeand "@gem3850 I am convinced my gut issues are due to the prednisone. Seeing a gastroenterologist today..." + (show)
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@gem3850
I am convinced my gut issues are due to the prednisone. Seeing a gastroenterologist today and hopefully he can shed some light on it. I have never had such crazy bowel issues and excess stomach acid since all this PMR treatment started. Also itching and hives.
Hope I’ll be off of it soon! I think you need a new doctor!!

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@caroljeand definitely effects stomach. Are you taking it with food?

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caroljeand | @caroljeand | Dec 31, 2025
In reply to @sharon44r "@caroljeand definitely effects stomach. Are you taking it with food?" + (show)
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@caroljeand definitely effects stomach. Are you taking it with food?

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@sharon44r
Definitely with food, with breakfast. Additionally drink kefir when taking the prednisone. Pills go down very easily with kefir.
Gastroenterologist felt that I was fine taking pantoprazole before lunch and famotidine at bedtime. Seems to help a lot.

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trina24 | @trina24 | Dec 31, 2025

I have had PMR for over 1 yr. Could not get out of bed
My Primary gave me Predisone referred me to Rheumatoligist
I coujd nit take Predisone
I have been on Actemra infusions for 1 yr. It has helped.
Trina( Theresa)

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pah17 | @pah17 | Jan 10 9:12pm
In reply to @johnbishop "Hi @tinman2020, I would like to add my welcome to Connect along with @colleenyoung and others...." + (show)
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Hi @tinman2020, I would like to add my welcome to Connect along with @colleenyoung and others. After I was diagnosed with PMR by a Mayo rheumatologist, I was started on 20 mg of prednisone daily. It took away all of my aches and pains but then I started my slow journey of tapering off of prednisone. It took 3-1/2 years going slowly. One of the things that helped was keeping a daily pain log which I recorded how much pain I felt on a scale of 0 to 10 along with the dosage of prednisone I took for that day. This allowed me to look back over time to see if I may be trying to taper too fast. My rheumatologist did give me a suggested tapering schedule but also told me to listen to my body and not go down too fast.

After I was able to taper off I went 6 years before my PMR came back. The second time I started looking into additional changes I could make that may help reduce the inflammation to help with the PMR. I started eating healthier, tried to exercise a little each day and just make better choices day by day. Here's some information that you may find helpful -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

Are you able to share a little more about what treatment you are currently following and what you have tried?

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@johnbishop It's interesting to meet you here since you've been most helpful in the neuropathy group. I may be starting a new journey now with PMR in addition to small fiber neuropathy (also, a fib, but that's another story). I will the diet and lifestyle changes. My daughter is urging the Mediterranean diet.

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