1. < Polymyalgia Rheumatica (PMR)

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.

milld835 | @milld835 | Jan 2, 2022
In reply to @microbe1943 "This is so helpful even retrospectively! I think I could help undiagnosed struggling folks maybe earlier..." + (show)
@microbe1943

This is so helpful even retrospectively! I think I could help undiagnosed struggling folks maybe earlier than say my 4.5 months from Moderna 2 to pillows Nd blankets AND rest trying to make it to keep middle of night!!!! Thanks

Jump to this post

Exactly!

REPLY
milld835 | @milld835 | Jan 2, 2022
In reply to @ajmencke "I am considering whether or not to get the 2nd Covid shot. I got the first..." + (show)
@ajmencke

I am considering whether or not to get the 2nd Covid shot. I got the first shot last February. Within a couple of days I was in misery. It took until April to figure out it was PMR so I was going on and off of prednisone and in and out of pain during that time. I talked with the rheumatologist about getting the second shot. He said I can when I am below 5 mg per day of prednisone and if it got the PMR increasing I can increase the prednisone 1 mg/week. I'm not sure what I'd like to do - take the second shot or just continue sequestering. What do we know about the effect of taking the vaccine on PMR? Does it cause a flare up? If so, how bad is the flare up? Are there any research data on this topic? I'm suspecting we're such a small percentage of the population that there hasn't been much research done.

Jump to this post

I would not take it again, knowing that this disease could results from it. We're now at the booster stage and I will NOT get one until I am diagnosed, on Prednisone and back to feeling better. Had I known the first shot last May would start my neck and shoulders and then my second jab in August, just 10 days before my neck, shoulders, arms and right hand put me in excrutiating pain, I probably would NOT have gotten any vax. This disease does not run in my family and started virtually over night. I didn't even know there was such a thing as PMR.

REPLY
milld835 | @milld835 | Jan 3, 2022
In reply to @ajmencke "I am considering whether or not to get the 2nd Covid shot. I got the first..." + (show)
@ajmencke

I am considering whether or not to get the 2nd Covid shot. I got the first shot last February. Within a couple of days I was in misery. It took until April to figure out it was PMR so I was going on and off of prednisone and in and out of pain during that time. I talked with the rheumatologist about getting the second shot. He said I can when I am below 5 mg per day of prednisone and if it got the PMR increasing I can increase the prednisone 1 mg/week. I'm not sure what I'd like to do - take the second shot or just continue sequestering. What do we know about the effect of taking the vaccine on PMR? Does it cause a flare up? If so, how bad is the flare up? Are there any research data on this topic? I'm suspecting we're such a small percentage of the population that there hasn't been much research done.

Jump to this post

I know nothing about what the vax causes, all I know is my story. Your doctor's advice sounds good. Ultimately, the choice is yours - somewhat. Good luck whatever you decide.

REPLY
Teri | @tsc | Jan 3, 2022
In reply to @microbe1943 "Your story brought to light a similar path to trying to understand what was going on..." + (show)
@microbe1943

Your story brought to light a similar path to trying to understand what was going on with my muscles in the earliest days of PMR before I knew what it was or that I had it. The pillow buying!!! OMG, it was my neck and back of head that were so uncomfortable. I too bought a 4149 pillow!!! And my blankets were impossible to pull up around me in the night...my shoulders hurt so much...I kept thinking, I need a very light puff blanket so I can maneuver it at night! Turning over was horrible and repositioning the blankets (not that heavy) was impossible. So, EARLY CLUES. Just good to share with others. Thanks for the pillow reminder!!! OMG

Jump to this post

This is so funny. My neck didn't bother me with PMR, but it was incredibly stiff and sore with GCA, and I bought pillows too, just thinking my problem was a stiff neck. I was dying to go to a chiropractor, but really afraid that the quick manuever they do to turn the neck would break mine so I never made an appointment. I had PMR and GCA way before I received COVID vaccines. The booster, just a couple of months ago, did not effect me at all. Now that I have osteoporosis, I read that it is best to use the smallest pillow possible to support the head - so I am using a small worn out throw pillow which works great. Best wishes for a happy and pain free New Year. Teri

REPLY
1 reply
Teri | @tsc | Jan 3, 2022
In reply to @aspine "It's terrible that you have not been getting the attention and treatment that you need. And..." + (show)
@aspine

It's terrible that you have not been getting the attention and treatment that you need. And that now that they know what it is you aren't getting the prednisone. Don't wait one minute longer than you have to. Get that prednisone going! If in fact PMR is the correct diagnosis, that prednisone will seem like a miracle to you! And it's about time!! If the prednisone doesn't work for you, then the doctors will need to keep looking.

Jump to this post

PMR does respond dramatically to the proper dosage of prednisone, which I hope you can get soon. As @aspine mentioned, if your symptoms do not go away with prednisone, it's something else. I sympathize with you - the pain and stiffness of PMR was off the charts for me, unlike anything I experienced before.

REPLY
milld835 | @milld835 | Jan 4, 2022
In reply to @tsc "This is so funny. My neck didn't bother me with PMR, but it was incredibly stiff..." + (show)
@tsc

This is so funny. My neck didn't bother me with PMR, but it was incredibly stiff and sore with GCA, and I bought pillows too, just thinking my problem was a stiff neck. I was dying to go to a chiropractor, but really afraid that the quick manuever they do to turn the neck would break mine so I never made an appointment. I had PMR and GCA way before I received COVID vaccines. The booster, just a couple of months ago, did not effect me at all. Now that I have osteoporosis, I read that it is best to use the smallest pillow possible to support the head - so I am using a small worn out throw pillow which works great. Best wishes for a happy and pain free New Year. Teri

Jump to this post

I'm waiting for my diagnosis actually this morning, although neurologist did say it sounds like PMR. I agree about the pillow thing. Ended up making a smaller pillow out of chipped memory foam, which seems the best so far out of the 5 or 6 expensive ones, that did nothing. All the best for pain freedom in the New Year.

REPLY
scpartain | @scpartain | Jan 4, 2022
In reply to @ajmencke "I am considering whether or not to get the 2nd Covid shot. I got the first..." + (show)
@ajmencke

I am considering whether or not to get the 2nd Covid shot. I got the first shot last February. Within a couple of days I was in misery. It took until April to figure out it was PMR so I was going on and off of prednisone and in and out of pain during that time. I talked with the rheumatologist about getting the second shot. He said I can when I am below 5 mg per day of prednisone and if it got the PMR increasing I can increase the prednisone 1 mg/week. I'm not sure what I'd like to do - take the second shot or just continue sequestering. What do we know about the effect of taking the vaccine on PMR? Does it cause a flare up? If so, how bad is the flare up? Are there any research data on this topic? I'm suspecting we're such a small percentage of the population that there hasn't been much research done.

Jump to this post

I also experienced a PMR flare almost immediately after receiving the Covid vaccine. I took prednisone which worked very quickly to relieve the symptoms and then I was able to successfully taper off over a three-month period. I am now in remission. I agonized for weeks over whether to have the booster shot. My rheumatologist opined that if I did contract the virus I would have a worse outcome because of my reaction to the vaccine and thought I should go ahead with the shot and take prednisone again if needed. With much trepidation I scheduled the shot and was very pleased when I did not experience another flare of PMR. Later on, I did come down with the virus but had almost no symptoms. Everyone's journey is different and each individual must weigh the options and try to arrive at the best decision. I wish you luck and hope you achieve remission soon.

REPLY
2 replies
fazz | @fazz | Jan 4, 2022

I was diagnosed with PMR 10 months ago and I’m in discovery on how to manage a quality of life while living with what PMR represents.

REPLY
2 replies
Teri | @tsc | Jan 4, 2022
In reply to @fazz "I was diagnosed with PMR 10 months ago and I’m in discovery on how to manage..." + (show)
@fazz

I was diagnosed with PMR 10 months ago and I’m in discovery on how to manage a quality of life while living with what PMR represents.

Jump to this post

Hi @fazz, are you being treated for PMR? With appropriate meds, the symptoms should disappear. I have both PMR and its companion disorder, Giant Cell Arteritis, and am virtually symptom free, after seven months of taking prednisone in tapered dosages, but I was not diagnosed for a year. One thing I have learned is to let go, not pressure myself to do too much and stop dwelling in the realm of negativity. How are you managing?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7, 2022

Hi all PMR-ers. Many of you have had the pleasure of crossing virtual paths with @tsc (Teri). Today Teri is our featured Member Spotlight. I think you'll enjoy @johnbishop's interview with Teri and getting to know more about how she finds balance, her interest in history and textile arts, and more:
- "Let Your Breath Find You": Meet @tsc https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/let-your-breath-find-you-meet-tsc/

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.