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

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.

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?

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

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

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:)

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.

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

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