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.

I’m Ethan, and I’m the moderator of this group. You’ll most likely be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

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?

@jth4d

Her only suggestion was alternate doses between 20 and 17.5 daily. I only have 5 mg tablets. I will ask her for some one mg tabs. Thanks again!

Did you have any blood tests during your treatment? Are there recommendations for blood work?

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You can also get prednisone in 2.5 mg tablets. I found those helpful also. My rheumatologist and primary care doc used the SED rate and CRP tests to check how I was doing.

Liked by jth4d

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@jth4d

Her only suggestion was alternate doses between 20 and 17.5 daily. I only have 5 mg tablets. I will ask her for some one mg tabs. Thanks again!

Did you have any blood tests during your treatment? Are there recommendations for blood work?

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Hi Jill,
Welcome to the community, it helps with feeling "normal".
I too was cutting 5mg tablets in half in an effort to taper down, like you I found that 2.5 mg was too big of a jump. I just recently got 1 mg tablets (which I learned about from the community;) and am managing the taper much better. A daily log is very helpful.
Good luck.

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@jth4d

Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

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SOUNDS LIKE WE ARE ON THIS JOURNEY TOGETHER! MY FAMILY DOCTOR IS GREAT NOW TREATING ME FOR A CHEST AND SINUS INFECTION DUE TO THE LOW IMMUNITY I NOW HAVE AND SO IT GOES. I SEE MY NEW DOCTOR A RHEUMATOLOGIST ON 3/12, TO START MY PMR PROGRAM, BOTH OF MY DOCTORS ARE WITHIN A 3 MILE RADIUS THANK GOODNESS AND CLOSE TO HOME . LIKE YOU WAS ALWAYS TOO ACTIVE AND I STILL AM BUT TRYING TO TAKE TIME TO REST AND READ MORE, IN OTHER WORDS SIT DOWN!! I USED TO PLAY ON THE GROUNDS OF UVA WHEN I WAS GROWING UP, MANY MOONS AGO AS I AM 78 NOW AND I DID NOT SIGN UP PMR….BUT IT IS WHAT IT IS! HAVE A GOOD DAY. JOYCE

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I hope I am handling this post correctly. I was diagnosed with PMR in March 2019. I have since been told that I also have GCA. Temple biopsy was inconclusive, but the pain in my temple along with legs, hips, shoulders and neck has my rheumatologist believing that I have both. I was started on Prednisone 20 mg. That had no effect on the pain. I was then put on 60 then 80 mg. Prednisone. That worked. Doctor had me start reducing the dosage on my return from a trip overseas. From 80, 60, 40, 20, 10, and then 9. My ESR, which dropped from over 100 to a normal 07 started to go up again, as well as an increased pain level. My Rheumatologist had me increase from 10 to 20 mg. Test are now back to a normal range with less pain. Just started the dosage réduction again at 15 mg Prednisone. So far, so good. In addition to all this, over the last several months I have experienced extremely weak legs. Some days worse then others. My doctor says I am experiencing steroid myopathy. Only way to get over the tired legs is to get off the Prednisone. That’s where I am with this illness right now. BTW… while on 80 mg. Prednisone last May, I came down with double pneumonia and sepsis. It’s been a long recovery, but I am way better then back in May.

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Go more slowly with the taper this time Greg, or you will end up back at 20 again and each time that happens it's harder to taper. I suggest you attempt to taper by 1mg to 10mgs, and then 0.5mgs from there, staying long enough at each new dose to adjust. Never taper in pain and remember, slow and steady. All the best.

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@gregp1

I hope I am handling this post correctly. I was diagnosed with PMR in March 2019. I have since been told that I also have GCA. Temple biopsy was inconclusive, but the pain in my temple along with legs, hips, shoulders and neck has my rheumatologist believing that I have both. I was started on Prednisone 20 mg. That had no effect on the pain. I was then put on 60 then 80 mg. Prednisone. That worked. Doctor had me start reducing the dosage on my return from a trip overseas. From 80, 60, 40, 20, 10, and then 9. My ESR, which dropped from over 100 to a normal 07 started to go up again, as well as an increased pain level. My Rheumatologist had me increase from 10 to 20 mg. Test are now back to a normal range with less pain. Just started the dosage réduction again at 15 mg Prednisone. So far, so good. In addition to all this, over the last several months I have experienced extremely weak legs. Some days worse then others. My doctor says I am experiencing steroid myopathy. Only way to get over the tired legs is to get off the Prednisone. That’s where I am with this illness right now. BTW… while on 80 mg. Prednisone last May, I came down with double pneumonia and sepsis. It’s been a long recovery, but I am way better then back in May.

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Hello @gregp1, I would like to add my welcome to Connect along with @jules11. In addition to the great suggestion by @jules11 to try tapering more slowly, I would also talk with your rheumatologist to get a script for 1 mg and 2.5 mg prednisone tablets to help you taper by smaller amounts when the pain comes back or go back up to a lower dosage than the previous dose when the pain comes back.

Slow and steady does really help with tapering.

Liked by steelbh

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@jules11

Go more slowly with the taper this time Greg, or you will end up back at 20 again and each time that happens it's harder to taper. I suggest you attempt to taper by 1mg to 10mgs, and then 0.5mgs from there, staying long enough at each new dose to adjust. Never taper in pain and remember, slow and steady. All the best.

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Thanks for the advice Jules. I will keep that in mind. My rheumatologist had me on 1 mg tapers from 10 down when I had to go back up from 9 to 20. It was a pretty slow 1 mg. Per month change. I will keep the .5 mg dosage in mind when I get there again.

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@johnbishop

Hello @gregp1, I would like to add my welcome to Connect along with @jules11. In addition to the great suggestion by @jules11 to try tapering more slowly, I would also talk with your rheumatologist to get a script for 1 mg and 2.5 mg prednisone tablets to help you taper by smaller amounts when the pain comes back or go back up to a lower dosage than the previous dose when the pain comes back.

Slow and steady does really help with tapering.

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Thanks John. I do have 1 mg tablets. I like your advice about adjusting small increments for pain. Will keep that in mind.

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@steelbh

I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs… not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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Hi my name is Roland yes PMR is a beast & where you are experiencing pain & discomfort is normal. Now I have had it for 4 years now & am stuck on pred. 2.5 mg/day, as far as going away yes they say 1 to 3 years but here I am at 4 years. My pain is now down to both wrist & fingers not bad considering that hips & shoulders are now fine. Mayo says that up to 40% of the people that have PMR never goes away not to encouraging but life goes on . I have started taking 15 ML of liquid turmeric 1000 mg a day & it does help. Turmeric in liquid form as any liquid is quickly absorbed in ones system vs powder or pill. Qunol is the product name which you can get at Wal-Mart or Costco. Also plenty of exercise is recommended I do my gym work in the morning yes getting out of bed in the morning well I don't have to tell you it is not good. Now I am 79 yrs young still motorcycling & snow skiing. Keeping going is the secret. Best of luck with your PMR.

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@rolandhp

Hi my name is Roland yes PMR is a beast & where you are experiencing pain & discomfort is normal. Now I have had it for 4 years now & am stuck on pred. 2.5 mg/day, as far as going away yes they say 1 to 3 years but here I am at 4 years. My pain is now down to both wrist & fingers not bad considering that hips & shoulders are now fine. Mayo says that up to 40% of the people that have PMR never goes away not to encouraging but life goes on . I have started taking 15 ML of liquid turmeric 1000 mg a day & it does help. Turmeric in liquid form as any liquid is quickly absorbed in ones system vs powder or pill. Qunol is the product name which you can get at Wal-Mart or Costco. Also plenty of exercise is recommended I do my gym work in the morning yes getting out of bed in the morning well I don't have to tell you it is not good. Now I am 79 yrs young still motorcycling & snow skiing. Keeping going is the secret. Best of luck with your PMR.

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I appreciate the encouragement, i will look into the turmeric liquid. I tried the pill for for 2 mo and didn’t feel a difference. Did u take methotrexate also? R u still on it? Any certain foods u stay away from? When u work out do you do it even when there is pain in those certain muscles? I’m afraid when i feel the pain when even lifting light weights I’m just inflaming the area that has inflammation. Or do u just keep working out thru the pain? Sorry for all the questions, but like to here some wisdom and experience. Thanks again.

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@steelbh

I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs… not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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Hello @steelbh, I would like to add my welcome to Connect along with @rolandhp and other members. There is another active discussion for PMR where you can learn what other members have shared and your post will have more visibility. I'm tagging our moderator @lisalucier to see if she can move your post to the following discussion:

> Groups > Polymyalgia Rheumatica (PMR) > Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-pmr-meet-others-share-your-story/

I have a friend that has PMR that was diagnosed around the same time as my first occurrence back in 2007. He was able to taper off of prednisone in about a year and it has stayed in remission. It took me a little over 3 years to taper off and it came out of remission in 2016 then it took me about 1-1/2 years to taper off the second time. Hopefully mine will stay in remission permanently. I think there are things you can do to help, one being a healthy diet and staying as active as you can without over doing it. Here's some information on diet and supplements that are helpful. I also take liquid turmeric (Qunol brand) to help with the inflammation.

Diet and Supplements for Polymyalgia Rheumatica (PMR) — https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr

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I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs… not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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@steelbh – I have moved your post here to this discussion @johnbishop recommended so that you can also get to know other members who have talked about polymyalgia rheumatica, like @rolandhp @gregp1 @jules11 @lumberjill @calicojoy.

I have been on prednisone before for stretches for my asthma, and I don't care for being on it. It's hard to sleep, and my husband does not prefer my personality on that med. 🙂 Others here may have some thoughts from their previous tapers off of prednisone. I always just followed a taper plan written on my pill bottle.

Is your doctor aware that you don't want to be taking the prednisone anymore? If so, has your doctor suggested a schedule for the taper?

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@steelbh

I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs… not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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Hello steelbh… I am so sorry that you have PMR…. I believe most people with PMR symptoms do go away in just a few years. There is lots of helpful information on this site about tapering very, very slowly. Read everything you can! Be your own advocate!

I was first diagnosed at age 44 with PMR… I've been dealing with it for 18 years. So yes, some people it lasts a good portion of their lifetime. The last flu vaccine I received in 2014 set it off again and I have felt it in my body ever since then.

I usually taper to 1 to 2 mg and stay there… which is fine with me to be able to live a full life with just a little pain. I'm very active ride Mountain Bikes, hike, chase grand kids!

Last September I got a virus in my chest, terrible cough that lasted almost 2 months. It set off the PMR again. Doc put me on a very quick prednisone taper 7mg to 0 in 6 weeks! I don't think he believed me when I said PMR had returned.

Once I came off the drug the pain came right back. I went in for labs last Thursday… blood works show inflammation on the rise, but SED rate is not over the "high" line. CRP is high, but not extremely yet. I know my body and if left unchecked without prednisone the inflammation will keep going up. So I am now waiting to see if the Rheumatologist will agree and prescribe Prednisone again, or if I have to suffer for a few more weeks to get higher inflammation markers. What a racket! So depressing… Quality of life is awful when dealing with this condition and having to prove you are in pain. 🙁

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@ltta

Hello steelbh… I am so sorry that you have PMR…. I believe most people with PMR symptoms do go away in just a few years. There is lots of helpful information on this site about tapering very, very slowly. Read everything you can! Be your own advocate!

I was first diagnosed at age 44 with PMR… I've been dealing with it for 18 years. So yes, some people it lasts a good portion of their lifetime. The last flu vaccine I received in 2014 set it off again and I have felt it in my body ever since then.

I usually taper to 1 to 2 mg and stay there… which is fine with me to be able to live a full life with just a little pain. I'm very active ride Mountain Bikes, hike, chase grand kids!

Last September I got a virus in my chest, terrible cough that lasted almost 2 months. It set off the PMR again. Doc put me on a very quick prednisone taper 7mg to 0 in 6 weeks! I don't think he believed me when I said PMR had returned.

Once I came off the drug the pain came right back. I went in for labs last Thursday… blood works show inflammation on the rise, but SED rate is not over the "high" line. CRP is high, but not extremely yet. I know my body and if left unchecked without prednisone the inflammation will keep going up. So I am now waiting to see if the Rheumatologist will agree and prescribe Prednisone again, or if I have to suffer for a few more weeks to get higher inflammation markers. What a racket! So depressing… Quality of life is awful when dealing with this condition and having to prove you are in pain. 🙁

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Tough situation when one must have to "prove" a flare of a longstanding condition as you have endured. Advocate for yourself with some written notes when you see the rheumatologist.

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