1. < Polymyalgia Rheumatica (PMR)
Profile picture for Ethan McConkey, Moderator

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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

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.

Profile picture for Mike
Mike | @dadcue | Jun 2 6:46am
In reply to @dd74 "@tyl411 Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about..." + (show)
Profile picture for dd74 @dd74

@tyl411
Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about a year. I am not any good at FB, Instagram or any social platform. I would like to know what and how people are using alternative therapies for PMR or RA. I'll keep searching. Since I am one of those sero -negative types my science based brain wonders if this is EORA vs. PMR. Whatever, it's not fun and I'll keep searching for answers.
dd

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@dd74

Since you are a nurse and one of those seronegative types ... have you ever tried a biologic? I'm both of those two things too,

I took prednisone for 30 years for a variety of problems. My first 15-20 years were not because of PMR . I took prednisone intermittently in high doses but I tapered off quickly. I was doing "reasonably well" until I started taking prednisone every day for PMR over the last 12 years. When I took prednisone every day for 12 years to treat PMR ... my overall health and well-being declined precipitously.

I tapered off prednisone about 6 years ago after a biologic called Actemra (tocilizumab) was started. It was still very difficult to taper off prednisone but now I have enjoyed a "prednisone free remission" for the last 6 years. My quality of life has vastly improved since I tapered off prednisone.

Mentally, a therapist I saw once said I had elements of medical PTSD. I told her that was from being a nurse!

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1 reply
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wrenn1939 | @wrenn1939 | Jun 2 8:11am
In reply to @rebeccaheard "I had never heard of PMR until I was diagnosed with it back in January. I..." + (show)
Profile picture for rebeccaheard @rebeccaheard

I had never heard of PMR until I was diagnosed with it back in January. I thought it was just a stiff neck, so my primary doctor prescribed a muscle relaxer - which did absolutely nothing. I soon was in excruciating pain lifting my head off the pillow in the mornings, so was basically taking NSAIDs every 4 hours which helped but not by much. Two weeks later, I could barely walk - it had moved into my upper thighs. That's when the doctor knew what it was. She started me on 20 mg of prednisone which was wonderful then down to 10mg which was still wonderful. Then she me taper down to 9 mg and then 8mg. The 8mg was not doing it for me, so she put me back up to 9mg which is where I am now. I feel like at this point, some days are worse than others. I now have an appointment with a rheumatologist in late June. Hoping for a replacement drug for the prednisone. I just joined this group today - is anyone taking a different medication besides prednisone that is working?

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@rebeccaheard
I started on prednisone 20mg in October 2025, then added Kevzara in January 2026. My rheumatologist has been lowering my prednisone by 2 1/2 mg per month. As of May 26 I am now down to 7 1/2mg prednisone and 200mg Kevzara shot every 2 weeks. So far no flare ups.

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Profile picture for dd74
dd74 | @dd74 | Jun 2 8:12am
In reply to @dadcue "@dd74 Since you are a nurse and one of those seronegative types ... have you ever..." + (show)
Profile picture for Mike @dadcue

@dd74

Since you are a nurse and one of those seronegative types ... have you ever tried a biologic? I'm both of those two things too,

I took prednisone for 30 years for a variety of problems. My first 15-20 years were not because of PMR . I took prednisone intermittently in high doses but I tapered off quickly. I was doing "reasonably well" until I started taking prednisone every day for PMR over the last 12 years. When I took prednisone every day for 12 years to treat PMR ... my overall health and well-being declined precipitously.

I tapered off prednisone about 6 years ago after a biologic called Actemra (tocilizumab) was started. It was still very difficult to taper off prednisone but now I have enjoyed a "prednisone free remission" for the last 6 years. My quality of life has vastly improved since I tapered off prednisone.

Mentally, a therapist I saw once said I had elements of medical PTSD. I told her that was from being a nurse!

Jump to this post

❤️

REPLY
Profile picture for dennisnie
dennisnie | @dennisnie | Jun 3 11:12am

Hi all
I was diagnosed with PMR about a year ago. I couldn't even get dressed my joints were so sore. I started on 15mg prednisone and had immediate relief. After a few months, I had tapered off to 1mg. So, I thought this was going to be "a piece of cake". I was very active. I played tennis, golf, kayaked and worked out in the gym. After a five-day kayaking trip, I had severe pain in my upper chest and shoulders. It even hurt to cough or sneeze. I had headaches that seemed to come up from my shoulder muscles. I saw my rheumatologist and he ramped the prednisone up to 20 because he was concerned about GCA. I have slowly tapered off and am down to 7mg but I am not pain free. I have found that the physical activity that I did before aggravates the situation, so I have stopped. I have been taking acetaminophen twice a day to deal with the pain. I don't see any point in continuing to taper off if I have pain. I seem to be stuck.

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2 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Jun 3 12:00pm
In reply to @dennisnie "Hi all I was diagnosed with PMR about a year ago. I couldn't even get dressed..." + (show)
Profile picture for dennisnie @dennisnie

Hi all
I was diagnosed with PMR about a year ago. I couldn't even get dressed my joints were so sore. I started on 15mg prednisone and had immediate relief. After a few months, I had tapered off to 1mg. So, I thought this was going to be "a piece of cake". I was very active. I played tennis, golf, kayaked and worked out in the gym. After a five-day kayaking trip, I had severe pain in my upper chest and shoulders. It even hurt to cough or sneeze. I had headaches that seemed to come up from my shoulder muscles. I saw my rheumatologist and he ramped the prednisone up to 20 because he was concerned about GCA. I have slowly tapered off and am down to 7mg but I am not pain free. I have found that the physical activity that I did before aggravates the situation, so I have stopped. I have been taking acetaminophen twice a day to deal with the pain. I don't see any point in continuing to taper off if I have pain. I seem to be stuck.

Jump to this post

Welcome @dennisnie, Tapering down can be difficult and like a lot of us have discovered there is no single tapering plan that works for everyone. My PMR is in remission for the second time and it's been over six years but I do remember that overdoing any physical activity/exercise would cause some additional pain the following day. I think the activity is really important to do but sometimes it's a little hard to know how much is too much. You might find the related discussion helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Many members have also used alternative treatments to help reduce prednisone use. Here's a search of Connect showing the discussions and comments - https://connect.mayoclinic.org/search/.

Are you able to talk to your rheumatologist to see if it may be an option to help you taper off?

REPLY
Profile picture for shjort
shjort | @shjort | Jun 3 12:05pm
In reply to @rebeccaheard "I had never heard of PMR until I was diagnosed with it back in January. I..." + (show)
Profile picture for rebeccaheard @rebeccaheard

I had never heard of PMR until I was diagnosed with it back in January. I thought it was just a stiff neck, so my primary doctor prescribed a muscle relaxer - which did absolutely nothing. I soon was in excruciating pain lifting my head off the pillow in the mornings, so was basically taking NSAIDs every 4 hours which helped but not by much. Two weeks later, I could barely walk - it had moved into my upper thighs. That's when the doctor knew what it was. She started me on 20 mg of prednisone which was wonderful then down to 10mg which was still wonderful. Then she me taper down to 9 mg and then 8mg. The 8mg was not doing it for me, so she put me back up to 9mg which is where I am now. I feel like at this point, some days are worse than others. I now have an appointment with a rheumatologist in late June. Hoping for a replacement drug for the prednisone. I just joined this group today - is anyone taking a different medication besides prednisone that is working?

Jump to this post

@rebeccaheard
This sounds like me! I love to walk with my small dogs. 2-3 miles depending on what is going on. When slowly noticed more and more pain. From standing at the sink, cooking. The pain was horrible that I would sit for a bit. Then it was hard to get up off the couch, out of bed.
I have double vision, I had a recent problem with my jaw joint! Brushing my teeth my joint popped out and back in‼️painful and I couldn’t open my mouth properly for a couple days.
My GP put me on prednisone. I couldn’t believe how much better I felt . Started walking again. Even on prednisone I have limits. The lowest I’ve gotten down on prednisone is 7 mg where I’m holding.
I finally have a Rheumatologist appointment July 17‼️
Maybe I will gain insight on PMR
This site has been a great resource

REPLY
1 reply
Profile picture for rebeccaheard
rebeccaheard | @rebeccaheard | Jun 3 1:39pm
In reply to @shjort "@rebeccaheard This sounds like me! I love to walk with my small dogs. 2-3 miles depending..." + (show)
Profile picture for shjort @shjort

@rebeccaheard
This sounds like me! I love to walk with my small dogs. 2-3 miles depending on what is going on. When slowly noticed more and more pain. From standing at the sink, cooking. The pain was horrible that I would sit for a bit. Then it was hard to get up off the couch, out of bed.
I have double vision, I had a recent problem with my jaw joint! Brushing my teeth my joint popped out and back in‼️painful and I couldn’t open my mouth properly for a couple days.
My GP put me on prednisone. I couldn’t believe how much better I felt . Started walking again. Even on prednisone I have limits. The lowest I’ve gotten down on prednisone is 7 mg where I’m holding.
I finally have a Rheumatologist appointment July 17‼️
Maybe I will gain insight on PMR
This site has been a great resource

Jump to this post

@shjort
Yes! I'm also looking forward to my rheumatologist to learn about other alternatives. My primary wants me to eventually taper down to 1mg but I can't see that happening if I'm barely surviving on the 8mg. I wish you luck!

REPLY
Profile picture for rebeccaheard
rebeccaheard | @rebeccaheard | Jun 3 1:41pm
In reply to @dennisnie "Hi all I was diagnosed with PMR about a year ago. I couldn't even get dressed..." + (show)
Profile picture for dennisnie @dennisnie

Hi all
I was diagnosed with PMR about a year ago. I couldn't even get dressed my joints were so sore. I started on 15mg prednisone and had immediate relief. After a few months, I had tapered off to 1mg. So, I thought this was going to be "a piece of cake". I was very active. I played tennis, golf, kayaked and worked out in the gym. After a five-day kayaking trip, I had severe pain in my upper chest and shoulders. It even hurt to cough or sneeze. I had headaches that seemed to come up from my shoulder muscles. I saw my rheumatologist and he ramped the prednisone up to 20 because he was concerned about GCA. I have slowly tapered off and am down to 7mg but I am not pain free. I have found that the physical activity that I did before aggravates the situation, so I have stopped. I have been taking acetaminophen twice a day to deal with the pain. I don't see any point in continuing to taper off if I have pain. I seem to be stuck.

Jump to this post

@dennisnie
I do the same - I take 2 Tylenol in the morning and 2 Alleve's in the afternoon. It helps a little bit, but not much. At work every time I get up from my desk I can barely walk - I feel like I'm 80 years old. And, I agree about the tapering off - I've researched but still don't really understand the dangers of not tapering off. I fell stuck also. But know you are not alone. I am so glad I found this group.

REPLY
Profile picture for jayanthk
jayanthk | @jayanthk | Jun 3 2:52pm

I was diagnosed with PMR after dealing with significant pain and stiffness, especially in the mornings, and I’m still learning how to manage the condition and the challenges that come with treatment. Some days are better than others, but I’m hoping to learn from others’ experiences, share what has helped me, and connect with people who understand what living with PMR is like.

REPLY
1 reply
Profile picture for tyl411
tyl411 | @tyl411 | Jun 3 4:55pm
In reply to @dd74 "@tyl411 Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about..." + (show)
Profile picture for dd74 @dd74

@tyl411
Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about a year. I am not any good at FB, Instagram or any social platform. I would like to know what and how people are using alternative therapies for PMR or RA. I'll keep searching. Since I am one of those sero -negative types my science based brain wonders if this is EORA vs. PMR. Whatever, it's not fun and I'll keep searching for answers.
dd

Jump to this post

@dd74
Not fun, so true, I am not that good at FB either. A friend lets me come by to look up anti-inflammatory news without interacting at all 🙂

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