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

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.

Hello! I was diagnosed with PMR last week. I am very fortunate to have been diagnosed very quickly, having had severe pain for about 10 days. This is my first episode. My daughter (a microbiologist) has suggested my Moderna vaccine may have been a trigger. I am relieved to find this group and look forward to advice and experience from members.

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@ingekunga

I had the AstraZeneca first dose am currently tapering and done to 2 mg I had no bad effects from the vaccine. Maybe that variety is better for people with PMR ?

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I too had the first AZ vaccine on the 14th April and also had absolutely no side effects to my knowledge. At the moment I am getting over another vertigo episode though but don’t think it is related to the vaccine or my PMR. My wife unfortunately had some quite worrying issues including severe heart palpitations that lasted two weeks plus a very sore arm to the elbow.

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@ajp2019

10mgs/day at one time or schedule 4 x 2.5 megs every 6 hours. What's recommended?;

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I take all mine in the morning midway through breakfast. Have had no issues of insomnia after the first week at 20mg.

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@priscillat

I was successfully treated for PMR with 20mg prednisone for 3 months, 15 mg for 1 month, 10 for one month; then down 1 mg per month until zero. No pain or stiffness during treatment or after. 10 weeks free from prednisone, my second Moderna vaccine caused a flare up. My doctor has started me at 15 mg prednisone, which doesn’t quite do the trick. I still have some pain in my thumbs, nearly all day. I have only been taking prednisone for 1 week at this point. My question is is it better to take less prednisone and deal with some pain, or take more and knock it out? Perhaps some of you know from experience.

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Great to see this as that is my regimen at the present time and on 9mg over 5 weeks then down to 8 for 5 weeks and so on to hopefully zero.

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@legendts

Great to see this as that is my regimen at the present time and on 9mg over 5 weeks then down to 8 for 5 weeks and so on to hopefully zero.

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It worked perfectly, and I celebrated each time I went down a mg. Was pain free for 10 weeks. Then 4 days after the second COVID vaccine, PMR came back - very recognizable to me, although my CRP was initially fine. After 1 month, and more blood tests, my Dr. was convinced as I was that PMR had flared up. We tried starting me at 15 mg, but that didn’t do the trick after one week. So, now I’m on 20 for 3 more weeks - and hopefully will begin to taper after that. Maybe only a year this time, instead of 14 months. Slow taper is so important.

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Sorry to hear the vaccine stirred up your PMR again. When I was diagnosed my CRP was also normal with a slightly elevated ESR that was elevated on the second test. So far so good and yes it is early days but time will tell. My only issue is my right knee every morning has limited movement, some days worse than others but generally eases off during the day but I’m not complaining as so many others are struggling with it. Take care.

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I joined this forum a couple of days ago and since then have read every post from the beginning. I'm so grateful to learn from your experience! I am sharing my story because I think it will help with the emotional shock I am feeling. I am a 62 year old woman who runs daily and lifts weights 3-4 times a week--so extremely active! I woke up one morning with stiff neck that, over the next few days, progressively moved to the usual suspect spots on my body (shoulders, thoracic spine, chest, wrist, hips). After a week of intense pain (unable to lift my arms, couldn't turn my head, screamed in pain with every movement--I know you've been there!), my son convinced me to go the ER. I was diagnosed with PMR during an emergency room visit on May 7. The amazing ER staff immediately consulted with a rheumatolagist who ordered the correct blood work and prescribed 20 mg prednisone. Within an hour my pain was gone! I can't believe how fortunate I am to have received such a quick diagnosis and an appointment with a rheumatolagist within 3 days. I was ready to tell the rheumatologist to take me off the Prednisone--I felt so good! Don't worry--I'm still on the 20 mg and plan to follow a slow and smart taper based on the wonderful advice from this forum. My heart goes out to those of you who suffered for weeks, months and years without a proper diagnosis. Thanks for this opportunity to share my story.

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@wmae

I joined this forum a couple of days ago and since then have read every post from the beginning. I'm so grateful to learn from your experience! I am sharing my story because I think it will help with the emotional shock I am feeling. I am a 62 year old woman who runs daily and lifts weights 3-4 times a week--so extremely active! I woke up one morning with stiff neck that, over the next few days, progressively moved to the usual suspect spots on my body (shoulders, thoracic spine, chest, wrist, hips). After a week of intense pain (unable to lift my arms, couldn't turn my head, screamed in pain with every movement--I know you've been there!), my son convinced me to go the ER. I was diagnosed with PMR during an emergency room visit on May 7. The amazing ER staff immediately consulted with a rheumatolagist who ordered the correct blood work and prescribed 20 mg prednisone. Within an hour my pain was gone! I can't believe how fortunate I am to have received such a quick diagnosis and an appointment with a rheumatolagist within 3 days. I was ready to tell the rheumatologist to take me off the Prednisone--I felt so good! Don't worry--I'm still on the 20 mg and plan to follow a slow and smart taper based on the wonderful advice from this forum. My heart goes out to those of you who suffered for weeks, months and years without a proper diagnosis. Thanks for this opportunity to share my story.

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Welcome to our not so little club 😉. I too devoured the many posts and learned much from them as I realise you did too. Wish I could see a rheumatologist that quickly. I was diagnosed in February but can’t see a rheumatologist until June 4th. So much for having private health insurance. If it wasn’t for Mayo Connect I don’t know what I would have done. Thank you again to all those wonderful people posting about their experiences with PMR and prednisone.

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@wmae

I joined this forum a couple of days ago and since then have read every post from the beginning. I'm so grateful to learn from your experience! I am sharing my story because I think it will help with the emotional shock I am feeling. I am a 62 year old woman who runs daily and lifts weights 3-4 times a week--so extremely active! I woke up one morning with stiff neck that, over the next few days, progressively moved to the usual suspect spots on my body (shoulders, thoracic spine, chest, wrist, hips). After a week of intense pain (unable to lift my arms, couldn't turn my head, screamed in pain with every movement--I know you've been there!), my son convinced me to go the ER. I was diagnosed with PMR during an emergency room visit on May 7. The amazing ER staff immediately consulted with a rheumatolagist who ordered the correct blood work and prescribed 20 mg prednisone. Within an hour my pain was gone! I can't believe how fortunate I am to have received such a quick diagnosis and an appointment with a rheumatolagist within 3 days. I was ready to tell the rheumatologist to take me off the Prednisone--I felt so good! Don't worry--I'm still on the 20 mg and plan to follow a slow and smart taper based on the wonderful advice from this forum. My heart goes out to those of you who suffered for weeks, months and years without a proper diagnosis. Thanks for this opportunity to share my story.

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You are lucky to get the quick diagnosis. I had my first bout of PMR when I was 57 and like you was very active, aerobics classes, weights, etc. It actually started the day after I got my a very good time in a 5-mile run/walk. I didn’t get a diagnosis for 2 months because I tried to heal it on my own (unsuccessfully). I was on prednisone for 2 years and then it was in remission for about 12 years. I am 74 now and on my 3rd bout. My first rheumatologist warned my not to lift weights over 2 pounds due to risk of tendenitis. I did have tendinitis twice and had PT to heal it. I also tried acupuncture and had side effects. One acupuncturist told me to avoid acupuncture when one has an autoimmune disease since it helps the immune system and makes the autoimmune disease worse. I don’t know if PMR is autoimmune or not. Be patient in reducing prednisone.

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@virginiaj

You are lucky to get the quick diagnosis. I had my first bout of PMR when I was 57 and like you was very active, aerobics classes, weights, etc. It actually started the day after I got my a very good time in a 5-mile run/walk. I didn’t get a diagnosis for 2 months because I tried to heal it on my own (unsuccessfully). I was on prednisone for 2 years and then it was in remission for about 12 years. I am 74 now and on my 3rd bout. My first rheumatologist warned my not to lift weights over 2 pounds due to risk of tendenitis. I did have tendinitis twice and had PT to heal it. I also tried acupuncture and had side effects. One acupuncturist told me to avoid acupuncture when one has an autoimmune disease since it helps the immune system and makes the autoimmune disease worse. I don’t know if PMR is autoimmune or not. Be patient in reducing prednisone.

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It is an autoimmune disease. Acupuncture I had before diagnosis made my PMR worse.

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