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.

@virginiaj

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

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Virginia J ; Nice of you to reply. PMR is constellation of symptoms that are baffling at times. I am curious when your 3 episodes of PMR occurred in the calendar year. I noticed the 3rd episode occurred this past December 2019. Do you recall in what month episode 1 and 2 started , or was diagnosed? Thanks David W.

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@johnbishop

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

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John, @johnbishop, thank you for serving as a mentor to polymyalgia Rheumatica group (PMR). I will speak with my doctor about splitting my prednisone dosage to 10mg in am, and 5mg in pm. as a means to lessen the nighttime and/or early morning symptoms.
I also have SFPN (small fiber peripheral neuropathy) ,idiopathic in origin. My rosacea is also flaring every couple weeks this past month or so.
How many of the PMR group also have co-existing auto-immune type conditions? John, are you able to broadcast this question?
Thank You. curious @phoenix0509 ,David W.

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@phoenix0509

John, @johnbishop, thank you for serving as a mentor to polymyalgia Rheumatica group (PMR). I will speak with my doctor about splitting my prednisone dosage to 10mg in am, and 5mg in pm. as a means to lessen the nighttime and/or early morning symptoms.
I also have SFPN (small fiber peripheral neuropathy) ,idiopathic in origin. My rosacea is also flaring every couple weeks this past month or so.
How many of the PMR group also have co-existing auto-immune type conditions? John, are you able to broadcast this question?
Thank You. curious @phoenix0509 ,David W.

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Hi David @phoenix0509, I also have idiopathic small fiber PN. I shared my neuropathy story in another discussion here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Not really able to do a broadcast message but I will post a question in the same discussion where I shared my story above and link to your post above.

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@phoenix0509

Virginia J ; Nice of you to reply. PMR is constellation of symptoms that are baffling at times. I am curious when your 3 episodes of PMR occurred in the calendar year. I noticed the 3rd episode occurred this past December 2019. Do you recall in what month episode 1 and 2 started , or was diagnosed? Thanks David W.

Jump to this post

My first bout started in September, diagnosed in late October. When symptoms started, I didn’t know what was wrong, tried stretching, different exercise until I finally went to physician. I had a really high sed rate, classic symptoms, was diagnosed by my primary care physician and saw rheumatologist the same day. The second time 12 years later, symptoms started in November, diagnosed in February. That time I had symptoms, but CRP was only high normal. This time symptoms started in November, diagnosed in December. I have had the same primary care physician for all 3 and we have an excellent relationship. She wants me to see a rheumatologist again and I will see one at the end of January, but not sure if I will learn anything new. I pretty much have been free to titrate my dose down, just sending her a message every 2 weeks as to where I am and when I need more prednisone. I also have neutropenia and have had that since my first bout 15 years ago. I saw a hematologist at the time, it has been unchanged for 15 years, so now my primary just tests it every 6 months. It causes no problems.

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Hi,

I was just recently diagnosed with PMR. I am currently on 15mg of prednisone down from 20mg.
Most of my pain is in my legs and hips. I am excited that I found a group that I can talk to and gain knowledge from.

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@mbm

Hi,

I was just recently diagnosed with PMR. I am currently on 15mg of prednisone down from 20mg.
Most of my pain is in my legs and hips. I am excited that I found a group that I can talk to and gain knowledge from.

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Hello @mbm, welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. You mentioned being at 15mg down from 20mg. Did your rheumatologist suggest a tapering schedule? Are you pain free at 15mg?

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@virginiaj

My first bout started in September, diagnosed in late October. When symptoms started, I didn’t know what was wrong, tried stretching, different exercise until I finally went to physician. I had a really high sed rate, classic symptoms, was diagnosed by my primary care physician and saw rheumatologist the same day. The second time 12 years later, symptoms started in November, diagnosed in February. That time I had symptoms, but CRP was only high normal. This time symptoms started in November, diagnosed in December. I have had the same primary care physician for all 3 and we have an excellent relationship. She wants me to see a rheumatologist again and I will see one at the end of January, but not sure if I will learn anything new. I pretty much have been free to titrate my dose down, just sending her a message every 2 weeks as to where I am and when I need more prednisone. I also have neutropenia and have had that since my first bout 15 years ago. I saw a hematologist at the time, it has been unchanged for 15 years, so now my primary just tests it every 6 months. It causes no problems.

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@virginiaj thank you for explaining what time of year your 3 bouts of PMR occurred , I find it interesting that all 3 bouts of PMR started in the fall of the year. September,November and November. Also interesting is that my first case of PMR became acute in December 2019. Diagnosed finally after clinical symptoms and high CRP (29). I did have a Flu vaccine and Prevnar Vaccine together in October (2019).
@virginiaj- did you get the flu vaccine or any vaccine each fall prior to the start of each occurrence of PMR?

Thanks, David

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@phoenix0509

@virginiaj thank you for explaining what time of year your 3 bouts of PMR occurred , I find it interesting that all 3 bouts of PMR started in the fall of the year. September,November and November. Also interesting is that my first case of PMR became acute in December 2019. Diagnosed finally after clinical symptoms and high CRP (29). I did have a Flu vaccine and Prevnar Vaccine together in October (2019).
@virginiaj- did you get the flu vaccine or any vaccine each fall prior to the start of each occurrence of PMR?

Thanks, David

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I worked in health care, so always got the flu vaccine, plus any others recommended. I don’t think it has any relation to onset of PMR. My first bout started the day after I did a 5k run/walk as fast as I could and was really stiff the next day. I thought it was from the exercise, but it never went away. I have tried to figure out causes and/or prevention, but have not found anything. For now, I just have learned to deal with it when it’s active and try to have healthy eating/exercise behaviors whether it’s active or not.

REPLY
@virginiaj

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

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I reread and saw my error. Normal CRP is 0-8

REPLY
@johnbishop

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

Jump to this post

Hello @johnbishop , an Update, interesting that I am now at day 13 of prednisone, 10mg/day x 10 days, then increased to 15mg/day for the last 3 days. I see only about a 40% decrease in symptoms. Its still early in the treatment of PMR. My symptoms are more bilateral arm pain/tingling and hip/leg bilateral tingling. arm pain > hip/leg pain. My MD elected a lower starting dose to help reduce the chance of a pseudoarthrosis at L5-S1 (TLIF November 2019). I am splitting my 15mg/day dose to 10mg/am and 5mg in pm. I am able to sleep longer at night (2 to 4 hrs) but still awake multiple times in pain. best David

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