1. < Polymyalgia Rheumatica (PMR)
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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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Mentor
John, Volunteer Mentor | @johnbishop | 3 hours ago
In reply to @martihenson41 "I’m so glad to find this connection! I’m new to this horrible crazy disease and struggling..." + (show)
Profile picture for martihenson41 @martihenson41

I’m so glad to find this connection! I’m new to this horrible crazy disease and struggling with the information. I started having shoulder and hip pain right after my 66 birthday. I’m a very active person so waking up like I had been strapped in a straight jacket and could not get dressed or off the toilet by myself was incredibly humbling. By afternoon could move but still a lot of pain. Attributing it to going tubing with the grandkids……. I went on for a month with incredible pain and stiffness. Finally went to dr and said there is definitely something wrong with me. Dr sent me to physical therapy. Which was not help. Because I could not do things in am…. But afternoon I could move again. So frustrating and again the shoulder and hip pain…. And other visit to dr. But this time I had started my own research. I knew what I had and asked for referral to rheumatologist.! I really think when you look super healthy on the outside…. The GP who know you as a super health active senior does not always listen. So I’m telling people. Advocate for yourself….complain, even when you don’t want to admit your pain. They need to listen better…. I was very lucky to get in to a rheumatologist after 2 weeks. Oct 15th. She heard me loud and clear! My blood markers were right on for PMR.
not the diagnosis I wanted. It scares me for sure! But after starting 20 mg daily of prednisone. I feel so much better. But the fear of tapering and pain coming back is scary to me. I’m staying positive…. But really the thought is always in the back of my mind. Anxious to see rheumatologist again middle of November. I cannot believe how quickly this has changed my life. I’m thankful for this discussion group! And all the helpful information.

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Welcome @martihenson41, We're glad you found Connect too! You are not alone with what I like to call "Mr. Ugly" PMR. I've had two occurrences and thankfully have been in remission going on 7 years now. Glad to hear you are working with a rheumatologist. There are a couple of good discussions you might find helpful:

-- 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/
-- Comprehensive Overview Of PMR
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

REPLY
Profile picture for boomermeg
boomermeg | @boomermeg | 1 hour ago
In reply to @martihenson41 "I’m so glad to find this connection! I’m new to this horrible crazy disease and struggling..." + (show)
Profile picture for martihenson41 @martihenson41

I’m so glad to find this connection! I’m new to this horrible crazy disease and struggling with the information. I started having shoulder and hip pain right after my 66 birthday. I’m a very active person so waking up like I had been strapped in a straight jacket and could not get dressed or off the toilet by myself was incredibly humbling. By afternoon could move but still a lot of pain. Attributing it to going tubing with the grandkids……. I went on for a month with incredible pain and stiffness. Finally went to dr and said there is definitely something wrong with me. Dr sent me to physical therapy. Which was not help. Because I could not do things in am…. But afternoon I could move again. So frustrating and again the shoulder and hip pain…. And other visit to dr. But this time I had started my own research. I knew what I had and asked for referral to rheumatologist.! I really think when you look super healthy on the outside…. The GP who know you as a super health active senior does not always listen. So I’m telling people. Advocate for yourself….complain, even when you don’t want to admit your pain. They need to listen better…. I was very lucky to get in to a rheumatologist after 2 weeks. Oct 15th. She heard me loud and clear! My blood markers were right on for PMR.
not the diagnosis I wanted. It scares me for sure! But after starting 20 mg daily of prednisone. I feel so much better. But the fear of tapering and pain coming back is scary to me. I’m staying positive…. But really the thought is always in the back of my mind. Anxious to see rheumatologist again middle of November. I cannot believe how quickly this has changed my life. I’m thankful for this discussion group! And all the helpful information.

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@martihenson41
Very glad you found this support group but sorry you've got PMR too. I also had to figure out my disease and then ask for referral to Rheumatologist. Thankfully they got me in right away when I told them my lab results and symptoms. That was 7/31/26 so I'm a newbie too. I hear you when you say there's fear of the pain coming back. Mine was brutal. Literally brutal and the weakness, stiffness, swelling in different parts of my body were bizarre. I didn't know if I had multiple things going on at the same time or what! Luckily, Prednisone does help right away as you say. There's also a lot of research being done on newer "biologic" type meds they call steroid sparing drugs. They're to help people taper off of Prednisone (steroids) without having flares (hopefully). My Rheumatologist prescribed Kevzara for me because I had to go from 15mg to 25mg to get total control of the pain and symptoms in the first days/weeks. I've been taking Kevzara (2x's now) and am down to 12.5mg (that's half of what I was at). So, progress does come and each one of us has different types/areas of pain/symptoms and different responses to treatment/medications. The biologic type meds are very expensive but depending on what type of insurance you have, the annual Rx deductible, once paid, you don't pay anything at all for the rest of the year. If you have a Medicare Advantage plan, that's how most work.
Try to take this "tiger" disease by the tail One Day At A Time. You will get through this and may never have any flares. That's something we have no control over. Might be better to focus on feeling as best you can each day and cross each bridge when you reach it. We're here for you and eachother. So many kind and knowledge people here to help you. May you find all the help you need. Blessings.

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