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.

kmeikle1 | @kmeikle1 | Jan 17, 2022

Most agree prednisone is the only treatment for PMR. I don't think anyone wants to take prednisone, but it works miracles for PMR and I was paralyzed with pain without it.

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sue16833 | @sue16833 | Jan 17, 2022

Everyone is different, however prior to my PMR Dx, I was a poor sleeper. While the prednisone Tx did make me feel energized, it did not change my sleep patterns. With the constant overall pain…..I would have been depressed without the prednisone to alleviate the constant pain and loss of the life I knew before PMR entered my life. Best wishes, this site helped me through the dark times. I will forever be grateful for each and every post.

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anniekirby | @anniekirby | Jan 17, 2022
In reply to @virginiaj "Not to discount your physician, but I think untreated PMR can cause insomnia and depression." + (show)
@virginiaj

Not to discount your physician, but I think untreated PMR can cause insomnia and depression.

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I agree as I get both when I have a flare up of my PMR. I no longer take Prednisone as I can’t tolerate the side effects.

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OldHen | @oldhen | Jan 17, 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.

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I agree with you regarding research. PMR confuses me and prednisone can't be the only answer. I have never in my life had a medical condition that I didn't understand. Can an osteoarthritis condition be the pain that I think is PMR? I am completely mystified. If this condition is new, could it be related to covid vaccine?
Take care everybody.

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1 reply
Teri | @tsc | Jan 17, 2022
In reply to @lglindsay3 "My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune..." + (show)
@lglindsay3

My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune disease, probably to PMR. I am nearly disabled by pain particularly in the mornings. My doctor suggests, however, that even after subsequent testing by a rheumatologist confirms his hunch about PMR, I would not be a good candidate for prednisone insofar as I suffer already with insomnia and depression. My question is whether there is any other treatment for PMR besides a steroid such as prednisone? I'm thinking "not", but thought I would ask.

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Hi @lglindsay3 There are some studies looking at alternatives to prednisone, but I don't know their status. Some members of Connect have mentioned being treated with methotrexate. Maybe they'll chime in.

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1 reply
Teri | @tsc | Jan 17, 2022
In reply to @oldhen "I agree with you regarding research. PMR confuses me and prednisone can't be the only answer...." + (show)
@oldhen

I agree with you regarding research. PMR confuses me and prednisone can't be the only answer. I have never in my life had a medical condition that I didn't understand. Can an osteoarthritis condition be the pain that I think is PMR? I am completely mystified. If this condition is new, could it be related to covid vaccine?
Take care everybody.

Jump to this post

Hi @oldhen PMR and its companion disorder Giant Cell Arteritis are autoimmune disorders with genetic markers that affect people, usually over 50, most often of European ancestry, and women more often than men. The average annual rate of PMR in the US is 52.5 per 100,000 patients. (Cecil and Goldman's Textbook of Medicine).For me, PMR was pain and stiffness on a scale of 10 in my whole body - from the neck to the feet. Sometimes in the mornings I felt I would faint from the pain. It eased up a little in the night, but always returned. I had it for a year prior to diagnosis and also developed Giant Cell Arteritis. (About 30% of those with PMR develop Giant Cell Arteritis). The earliest record of GCA dates back to the 10th century so these diseases are not new. Through all this I had osteoarthritis of my shoulder that is slowly getting better after 9 months of Physical Therapy. I had COVID vaccines, booster and flu shot with no adverse symptoms. My PMR was triggered by an ankle injury. My aunt's was triggered by a back injury. I hope you are able to find relief.

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1 reply
scpartain | @scpartain | Jan 18, 2022
In reply to @lglindsay3 "My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune..." + (show)
@lglindsay3

My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune disease, probably to PMR. I am nearly disabled by pain particularly in the mornings. My doctor suggests, however, that even after subsequent testing by a rheumatologist confirms his hunch about PMR, I would not be a good candidate for prednisone insofar as I suffer already with insomnia and depression. My question is whether there is any other treatment for PMR besides a steroid such as prednisone? I'm thinking "not", but thought I would ask.

Jump to this post

In my experience during two bouts of PMR, one of the worst features of the disorder is the sleep and rest disturbance associated with it. When my PMR was active, sitting or lying down intensified the pain to the point that it felt like a hammer was attacking my shoulder and hip joints. With other forms of muscle and joint pain, rest is usually helpful, but with PMR, the exact opposite seems to be the case. Until I received prednisone treatment, I was worn out from sleeplessness and lack of rest. No other drug afforded the slightest bit of relief. I am very thankful that my PMR is now in remission.

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OldHen | @oldhen | Jan 18, 2022
In reply to @tsc "Hi @oldhen PMR and its companion disorder Giant Cell Arteritis are autoimmune disorders with genetic markers..." + (show)
@tsc

Hi @oldhen PMR and its companion disorder Giant Cell Arteritis are autoimmune disorders with genetic markers that affect people, usually over 50, most often of European ancestry, and women more often than men. The average annual rate of PMR in the US is 52.5 per 100,000 patients. (Cecil and Goldman's Textbook of Medicine).For me, PMR was pain and stiffness on a scale of 10 in my whole body - from the neck to the feet. Sometimes in the mornings I felt I would faint from the pain. It eased up a little in the night, but always returned. I had it for a year prior to diagnosis and also developed Giant Cell Arteritis. (About 30% of those with PMR develop Giant Cell Arteritis). The earliest record of GCA dates back to the 10th century so these diseases are not new. Through all this I had osteoarthritis of my shoulder that is slowly getting better after 9 months of Physical Therapy. I had COVID vaccines, booster and flu shot with no adverse symptoms. My PMR was triggered by an ankle injury. My aunt's was triggered by a back injury. I hope you are able to find relief.

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thank you Terri for your input. what I don't understand is why am I being weaned off Pred if I am in pain. I don't even know if tylenol is safe to take
Thank you again...

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1 reply
judyjh | @judyjh | Jan 18, 2022
In reply to @tsc "Hi @lglindsay3 There are some studies looking at alternatives to prednisone, but I don't know their..." + (show)
@tsc

Hi @lglindsay3 There are some studies looking at alternatives to prednisone, but I don't know their status. Some members of Connect have mentioned being treated with methotrexate. Maybe they'll chime in.

Jump to this post

Hello all, I am on tapering does Prednisone (5.5 daily) and methotrexate. Without the methotrexate, I just was unable to taper the prednisone down, with pain and poor sleep. I feel pretty good now! My rheumatologist doesn't not like extended use of prednisone (me, one year) because of the side effects, especially bone health. Thanks, J

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1 reply
Teri | @tsc | Jan 18, 2022
In reply to @oldhen "thank you Terri for your input. what I don't understand is why am I being weaned..." + (show)
@oldhen

thank you Terri for your input. what I don't understand is why am I being weaned off Pred if I am in pain. I don't even know if tylenol is safe to take
Thank you again...

Jump to this post

Dear @oldhen are you being treated by a rheumatologist? When I started the taper, my doctor told me to go back up to the higher dosage if my symptoms returned. Tylenol is safe with prednisone and NSAIDs are to be avoided. But prednisone calms down the immune system.

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