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.

@jerseyjames

Hi Ethan. I am new to the group and really appreciate the perspectives and experiences expressed here. I am a 73 year old white male with no known Viking genes [ha ha?]. Further health-related context: Developed symptoms of Ankylosing Spondylitis in my mind-twenties and have managed it over the decades with the help of the physical therapy, the VA, and some great PCP's and rheumatologists. I am basically fused from the mid-thorax to the neck...but not too bent over. My days of painting ceilings and catching pop fly balls are over, but with the fusing, the pain has subsided quite a bit. Over the years I have taken just about every type of medication including biologics but as the AS inflammation decreased, so also did the pain. So much for AS.

Regarding PMR, it came on me around Memorial Day 2020 and the most interesting thing to me is that I presented with almost the exact text book symptoms and experiences as those documented on this board as well as all over the internet. Most importantly, this very specific pain came upon me before I even know what PMR was. I had never heard of it and did not know anyone who suffered with it. Hence, no possibility of my being influenced by anyone's experiences other than my own.

At the beginning, it was very painful to rise from a chair, or tuck in a shirt, or wash my hair - as hip/shoulder girdles were severely impacted. I also had severe carpal tunnel pain/tingling in the right thumb and trigger-finger while sleeping. My PCP was inclined to begin a Prednisone taper (50mg to 10mg) over the course of two weeks. He also did a sed rate and a CRP as well as the other indicated labs. Interesting to note that over the years in spite of excruciating arthritic pain and joint fusing, my sed rates were never particularly high, and I never had a lot of swelling or redness. This time, the sed rate was 58. You will probably not be surprised to hear that all of the PMR pain and symptoms (including carpal tunnel) went away in the first 12 hours of the taper. At the end of the first two weeks I was feeling as good as possible. Also, no indications of GCA.

We then transitioned to my rheumatologist and we began the process of moving from 10 Mg/day to lower dosages. Suspect we taped down to 5 mg a little too quickly and some of the symptoms returned. Right now I am at 8 Mg/day and doing OK but some of the shoulder pain is returning...although not that debilitating so my Rheumatologist and I have agreed to continue for another month. It really is not that painful and just being able to get up and down or pick up something from the floor without wishing for a sky-hook has been uplifting.

Sorry to go on and on with my life story but I guess my question for now is to seek opinions and experiences as to whether to anticipate the other joints/muscles to be re-impacted or if maybe holding at 8 for many months is a better way to go. I'm also struggling to understand whether this pain, although definitely real, is local to the joints/muscles, or is impacting the pain-receptors in the brain.

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Hello @jerseyjames, Welcome to Mayo Clinic Connect. Thanks for sharing your PMR experience. It sounds a lot like that of others who have shared their PMR story with trying to taper off of prednisone. My PMR is currently in remission since 2018 when I was able to taper off of prednisone for the second time. My first bout with PMR was 2007 and I was started with 20 mg prednisone. It took me three and half years to taper off with the last six months spent going between 1 mg and 1/2 mg dosage until I was finally able to stop taking it with only minor discomfort/pain. The pain from my occurrences of PMR was mostly in the shoulders, arms, hands but some in the legs. The PMR stayed in remission from 2010 until 2016 and I again went on 20 mg prednisone. This time it took about a year and half to taper off. Early in the tapering I tried to go down by 5 mg's a week but later found 2-1/2 mg worked a little better for me. I also had the doctor prescribe some 2.5 mg and 1 mg pills so that I could easily decrease in smaller amounts if needed. My rheumatologist worked with me on different tapering suggestions which were really helpful the first time around and I was able to build on that success the second time around.

There is another discussion which you might find helpful - PMR Anyone?: https://connect.mayoclinic.org/discussion/pmr-anyone/

@alanbruce @olegraymare @rolandhp @phoenix0509 @terre and other members may be able to share their experience with you.

I never had a thought about impacting pain-receptors in the brain. From what I've read PMR is driven by inflammation. I do think pain-receptors in the brain can trigger pain for other conditions with PMR like symptoms. There is a little information in this article - What Is Polymyalgia Rheumatica? These Are the Signs You Could Have It: https://creakyjoints.org/education/what-is-polymyalgia-rheumatica/

Have you discussed your thoughts with your doctor or rheumatologist?

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@johnbishop

Hello @jerseyjames, Welcome to Mayo Clinic Connect. Thanks for sharing your PMR experience. It sounds a lot like that of others who have shared their PMR story with trying to taper off of prednisone. My PMR is currently in remission since 2018 when I was able to taper off of prednisone for the second time. My first bout with PMR was 2007 and I was started with 20 mg prednisone. It took me three and half years to taper off with the last six months spent going between 1 mg and 1/2 mg dosage until I was finally able to stop taking it with only minor discomfort/pain. The pain from my occurrences of PMR was mostly in the shoulders, arms, hands but some in the legs. The PMR stayed in remission from 2010 until 2016 and I again went on 20 mg prednisone. This time it took about a year and half to taper off. Early in the tapering I tried to go down by 5 mg's a week but later found 2-1/2 mg worked a little better for me. I also had the doctor prescribe some 2.5 mg and 1 mg pills so that I could easily decrease in smaller amounts if needed. My rheumatologist worked with me on different tapering suggestions which were really helpful the first time around and I was able to build on that success the second time around.

There is another discussion which you might find helpful - PMR Anyone?: https://connect.mayoclinic.org/discussion/pmr-anyone/

@alanbruce @olegraymare @rolandhp @phoenix0509 @terre and other members may be able to share their experience with you.

I never had a thought about impacting pain-receptors in the brain. From what I've read PMR is driven by inflammation. I do think pain-receptors in the brain can trigger pain for other conditions with PMR like symptoms. There is a little information in this article - What Is Polymyalgia Rheumatica? These Are the Signs You Could Have It: https://creakyjoints.org/education/what-is-polymyalgia-rheumatica/

Have you discussed your thoughts with your doctor or rheumatologist?

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Hello again John. I think your view of PMR symptoms being largely driven by inflammation is correct clinically, but my situation seems to be consistent with perhaps 20% of PMR patients. My Sed Rate and CRP have been normal over recent months. That said, my pain is pretty intense, especially at the shoulders and neck muscles when I titrate down below 10 mg's per day. So if a given Rheumatologist is of the school that believes there should be a direct proportion between these test-results for inflammation and the level of patient discomfort, he/she might either look for some other causation, or just put me in the 20%.

I'll see my doc tomorrow and he has been very supportive but I'm sort of putting him between a rock and a hard place as we all know that staying on Prednisone long-term is not desirable and his goal of getting me down to 5 mg or less seems to be the gold standard. Perhaps he will recommend some other type of taper schedule such as a little higher does every 2nd or 3rd day, or some such. I also wonder it might not be a bad idea to approach this in parallel from an adrenal insufficiency direction, and consult with an endocrinologist. Just what I need, another doctor.

All things considered, I am in much better shape than 6 months ago as then I could not get up from a chair, or tuck in a shirt, or pick up something off the floor, and carpal tunnel was very painful in the hand, All of that is history - and the shoulders/neck remains....all somewhat exacerbated by 50 years of Ankylosing Spondylitis and the fused spine/neck. But more stiffness than pain from that.

Thanks again for your support - always interested to know if any of this resonates across the fruited plain.

Jim

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@jerseyjames

Hello again John. I think your view of PMR symptoms being largely driven by inflammation is correct clinically, but my situation seems to be consistent with perhaps 20% of PMR patients. My Sed Rate and CRP have been normal over recent months. That said, my pain is pretty intense, especially at the shoulders and neck muscles when I titrate down below 10 mg's per day. So if a given Rheumatologist is of the school that believes there should be a direct proportion between these test-results for inflammation and the level of patient discomfort, he/she might either look for some other causation, or just put me in the 20%.

I'll see my doc tomorrow and he has been very supportive but I'm sort of putting him between a rock and a hard place as we all know that staying on Prednisone long-term is not desirable and his goal of getting me down to 5 mg or less seems to be the gold standard. Perhaps he will recommend some other type of taper schedule such as a little higher does every 2nd or 3rd day, or some such. I also wonder it might not be a bad idea to approach this in parallel from an adrenal insufficiency direction, and consult with an endocrinologist. Just what I need, another doctor.

All things considered, I am in much better shape than 6 months ago as then I could not get up from a chair, or tuck in a shirt, or pick up something off the floor, and carpal tunnel was very painful in the hand, All of that is history - and the shoulders/neck remains....all somewhat exacerbated by 50 years of Ankylosing Spondylitis and the fused spine/neck. But more stiffness than pain from that.

Thanks again for your support - always interested to know if any of this resonates across the fruited plain.

Jim

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Interesting comments thank you Jim. You mention the relationship between measurements through blood tests, and symptoms. For myself I found they relate exactly. In other words CPR of 40 at diagnosis, feeling dreadful, going down rapidly to under 10 after a week of 15 mg prednisone, feeling fine, and then 9 to 12 range as I got down to 1 mg. over 18 months, almost back to normal. The discomfort and awkwardness matched the numbers each time. CPR is 9 now while I take this 1 mg on two days a week. Great to be able to move around more freely but still can't get up easily or pull on shoes or socks but that's a small issue and again the symptoms match the CPR. Glad to hear you are feeling in better shape.

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@jerseyjames

Hello again John. I think your view of PMR symptoms being largely driven by inflammation is correct clinically, but my situation seems to be consistent with perhaps 20% of PMR patients. My Sed Rate and CRP have been normal over recent months. That said, my pain is pretty intense, especially at the shoulders and neck muscles when I titrate down below 10 mg's per day. So if a given Rheumatologist is of the school that believes there should be a direct proportion between these test-results for inflammation and the level of patient discomfort, he/she might either look for some other causation, or just put me in the 20%.

I'll see my doc tomorrow and he has been very supportive but I'm sort of putting him between a rock and a hard place as we all know that staying on Prednisone long-term is not desirable and his goal of getting me down to 5 mg or less seems to be the gold standard. Perhaps he will recommend some other type of taper schedule such as a little higher does every 2nd or 3rd day, or some such. I also wonder it might not be a bad idea to approach this in parallel from an adrenal insufficiency direction, and consult with an endocrinologist. Just what I need, another doctor.

All things considered, I am in much better shape than 6 months ago as then I could not get up from a chair, or tuck in a shirt, or pick up something off the floor, and carpal tunnel was very painful in the hand, All of that is history - and the shoulders/neck remains....all somewhat exacerbated by 50 years of Ankylosing Spondylitis and the fused spine/neck. But more stiffness than pain from that.

Thanks again for your support - always interested to know if any of this resonates across the fruited plain.

Jim

Jump to this post

Hello @jerseyjames . Like you, my CRP and sed rate numbers are in the normal range! I thought I was the only one! Misery really does love company, I suppose. At the very least, it's not in my imagination when I am unable to brush my hair! My rheumotologist has me on 15 mg. daily of prednisone (I have been on varying doses of prednisone since Aug. 2017 for another disease) and in the past few months he has also prescribed methotrexate for me. It has helped to some degree, but this climate (I'm from Canada) seems to be killer for me. Anyway, if you haven't tried methotrexate, it might be a pathway for you. I hope this helps!

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I don't understand why people are still having pain if they are on prednisone. I started on 20 mg three months ago and after the first day or less there has been no pain. Then I was on 15 mg for 30 days then 10 mg for 30 days which is up in two days and then I should be on 9 for 30 and 1 mg less each 30 days after. It worked for me 5 years ago and I'm hoping it does again. I'm probably just lucky. I'm a young 67 and usually quite mobile so that could be it too compared to others. Without prednisone, I'm a crippled old 99 year old:)

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@jallenaz

I don't understand why people are still having pain if they are on prednisone. I started on 20 mg three months ago and after the first day or less there has been no pain. Then I was on 15 mg for 30 days then 10 mg for 30 days which is up in two days and then I should be on 9 for 30 and 1 mg less each 30 days after. It worked for me 5 years ago and I'm hoping it does again. I'm probably just lucky. I'm a young 67 and usually quite mobile so that could be it too compared to others. Without prednisone, I'm a crippled old 99 year old:)

Jump to this post

The answer is that too many people don’t take enough Prednisone to kill the pain. We’re all different and the beginning dose that is required takes a bit of trial and error. No one wants to be on Prednisone, but it sure beats PMR pain. The general rule is to take as little as possible that controls the pain and then taper from there VERY SLOWLY. Everyone is different about tapering also, but rheumatologists sometimes urge patients to cut back far too soon. The actual median time for “clearing” PMR and Prednisone use is reported to be over five years by a support group in Europe with over 11,000 members. When you get to 10 mg or less, the tapering should be by 1 mg or even 1/2 a day and it requires some time (up to a month) to know if that level is still knocking out the pain. Prednisone does have many known side effects and isn’t to be taken lightly, but we are fortunate to have such a powerful weapon in our arsenal because nothing else touches PMR pain.

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@johnbishop

Thanks for starting a PMR Group Ethan @ethanmcconkey! I hope other members with PMR will share their experience and share any tips they have.

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

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I have a question. Has any one take Fosamaxw? I am on 8 mg of prednisone and have osteoporosis. I started prednisone medication 5 months ago. Just wanting to know if any one else is on it. Thank so much far any information you might give me

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@123suew

I have a question. Has any one take Fosamaxw? I am on 8 mg of prednisone and have osteoporosis. I started prednisone medication 5 months ago. Just wanting to know if any one else is on it. Thank so much far any information you might give me

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Hello @123suew, I think @alanbruce @pattitoo and @murp may be able to share their experience with Fosamax. There is also another discussion that you may be interested in following.

Calcium and Vitamin D for bone density: https://connect.mayoclinic.org/discussion/calcium-and-vitamin-d-for-bone-density/

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@123suew

I have a question. Has any one take Fosamaxw? I am on 8 mg of prednisone and have osteoporosis. I started prednisone medication 5 months ago. Just wanting to know if any one else is on it. Thank so much far any information you might give me

Jump to this post

Hi,
I have PMR and have been weaning down very slowly and am now at 5 mg. of prednisone. So far, so good - no pain. I too started on prednisone about 5 months ago. I was quite sure that I had PMR but it took a couple GP's who dismissed my thinking until I finally landed on a Rheumatologist that concurred. i was one of those that had a normal ESR and CRP, but i was aware that 20% of those with PMR can have normal values.
I had a DEXA scan which showed osteopenia (lumbar and hip). My hip scores are very close to being in the osteoporosis range. My rheumatologist said I was a candidate for fosamax because of the scores and the long term use of prednisone.
I must preface with - this is just my thinking and approach right now, although that could certainly change if warranted in the future (strong family history of osteoporosis as well). I have chosen to not go on fosamax right now, because I recall the difficulty and discomfort experienced my Mother. She ended up having problems with her esophagus and afib that her Doctor thought was correlated with fosamax use. I have upped my calcium, Vitamin K, Vitamin D and take a supplement that has all the above including strontium (Bone Strength). I eat alot of calcium rich foods. I also do quite a bit of weight bearing exercise and work out with a weighted vest. All this to say, I am hoping that my next DEXA scan will not show a worsening. I am aware that fractures are not just a function of bone density but are also a result of bone strength, so hoping for the best.
Take care and just wanted to share my current thoughts right now. I know many people have not had serious side effects to fosamax.

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Thank you to everyone who responded! This is a great group of people! Your replies are very helpful!

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