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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 | 16 hours ago
In reply to @dd74 "@tyl411 Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about..." + (show)
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@tyl411
Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about a year. I am not any good at FB, Instagram or any social platform. I would like to know what and how people are using alternative therapies for PMR or RA. I'll keep searching. Since I am one of those sero -negative types my science based brain wonders if this is EORA vs. PMR. Whatever, it's not fun and I'll keep searching for answers.
dd

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@dd74

Since you are a nurse and one of those seronegative types ... have you ever tried a biologic? I'm both of those two things too,

I took prednisone for 30 years for a variety of problems. My first 15-20 years were not because of PMR . I took prednisone intermittently in high doses but I tapered off quickly. I was doing "reasonably well" until I started taking prednisone every day for PMR over the last 12 years. When I took prednisone every day for 12 years to treat PMR ... my overall health and well-being declined precipitously.

I tapered off prednisone about 6 years ago after a biologic called Actemra (tocilizumab) was started. It was still very difficult to taper off prednisone but now I have enjoyed a "prednisone free remission" for the last 6 years. My quality of life has vastly improved since I tapered off prednisone.

Mentally, a therapist I saw once said I had elements of medical PTSD. I told her that was from being a nurse!

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wrenn1939 | @wrenn1939 | 14 hours ago
In reply to @rebeccaheard "I had never heard of PMR until I was diagnosed with it back in January. I..." + (show)
Profile picture for rebeccaheard @rebeccaheard

I had never heard of PMR until I was diagnosed with it back in January. I thought it was just a stiff neck, so my primary doctor prescribed a muscle relaxer - which did absolutely nothing. I soon was in excruciating pain lifting my head off the pillow in the mornings, so was basically taking NSAIDs every 4 hours which helped but not by much. Two weeks later, I could barely walk - it had moved into my upper thighs. That's when the doctor knew what it was. She started me on 20 mg of prednisone which was wonderful then down to 10mg which was still wonderful. Then she me taper down to 9 mg and then 8mg. The 8mg was not doing it for me, so she put me back up to 9mg which is where I am now. I feel like at this point, some days are worse than others. I now have an appointment with a rheumatologist in late June. Hoping for a replacement drug for the prednisone. I just joined this group today - is anyone taking a different medication besides prednisone that is working?

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@rebeccaheard
I started on prednisone 20mg in October 2025, then added Kevzara in January 2026. My rheumatologist has been lowering my prednisone by 2 1/2 mg per month. As of May 26 I am now down to 7 1/2mg prednisone and 200mg Kevzara shot every 2 weeks. So far no flare ups.

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