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.

rugi53 | @rugi53 | Sep 16 1:10am

In reply to @gin3 "Does anyone experience cold temperature differently? I have become very sensitive to the cold." + (show)

@gin3 I was always ‘the furnace’ in our family. Now I’m often the coldest. For me (all things considered) that’s a relatively minor annoyance.

kjoed53 | @kjoed53 | Sep 16 7:05am

In reply to @bkearbey1 "@bkearbey1 91 days off prednisone now. I fear I may need to go back to prednisone..." + (show)

@bkearbey1
3mg LDN helps me sleep. I'm down to 1.5mg prednisone and I'm still waiting for kevzara to start picking up the slack.

bkearbey1 | @bkearbey1 | Sep 16 7:36am

In reply to @gabbag "@bkearbey1 this is helpful, I have been off prednisone for going on 3 weeks after near..." + (show)

@gabbag hope you can plow through the pain… I had some minor pain probably 3-4 weeks after my last taper and have unfortunately been getting a little worse since… 92 days off now and as long as I can sleep 7 hours I am going to stay off prednisone. Most tense pain is in my left arm/shoulder… Dr suggested trying a shot of cortisone in my left shoulder … thinking maybe, but it seems everyone has to figure this out for themselves as everyone seems to respond differently… Just a reference to sleeping 7 hours it’s not like I’m sleeping 7 hrs straight I am up multiple times and have pain at 2:30am it seems almost every night… I always try to allow at least 8-10 hrs of sleep time… Onward!!! 🙏🙏🙏

potterywoman | @potterywoman | Sep 16 8:18am

In reply to @p0rtia "@gabbag "Do others also have this all day?" Yes. Pre-pred, I was stiff and exhausted pretty..." + (show)

@p0rtia I find your remark about getting a boost of energy around 4:00 pm interesting. I have found the same thing, which I thought was odd because I had thought that afternoons should be a time when I would feel less energetic.

britton62 | @britton62 | Sep 16 8:50am

In reply to @gabbag "@bkearbey1 this is helpful, I have been off prednisone for going on 3 weeks after near..." + (show)

@gabbag
I'm looking forward to tapering completely off the prednisone because it's my best friend and worst enemy. I'm down to 6 mg.....started at 15 mg October 2025.......I keep thinking that I can drop 1 mg per month, but once you get down to single digits it seems tougher because, percentage-wise, it's a significant drop. How long were you on prednisone altogether and how did those final few drops in dosage go?

bkearbey1 | @bkearbey1 | Sep 16 9:03am

In reply to @britton62 "@gabbag I'm looking forward to tapering completely off the prednisone because it's my best friend and..." + (show)

@britton62 I have tapered off prednisone 3 times since October of 2025... First time lasted 3 weeks second time lasted 3 weeks and now 92 days... The lowest dose I ever was told to take when tapering off was 5 mg.... The last time I tapered off I went to 2.5 mg for about 10 days and that was my own decision to go to 2.5 mg... However I did mention to my Rheumatologist and he was okay with it. Besides the every other day sitting in the Infrared Sauna for 20 minutes at 120 degrees. I also use a gel called Stopain and use it after showering every morning and sometimes an hour before going to bed. Wash my hands after every use as it can burn eyes etc... Again I think this immune condition(PMR) is something everyone has to figure out for themselves... I am praying this will completely go away at some point, In the mean time Onward!! Bill

bkearbey1 | @bkearbey1 | Sep 16 9:04am

In reply to @bkearbey1 "@britton62 I have tapered off prednisone 3 times since October of 2025... First time lasted 3..." + (show)

@bkearbey1 I think I may end up on 1 mg of prednisone if I keep having this pain.

britton62 | @britton62 | Sep 16 9:36am

In reply to @bkearbey1 "@britton62 I have tapered off prednisone 3 times since October of 2025... First time lasted 3..." + (show)

@bkearbey1

Thanks for the quick reply......I really thought that I'd have to taper 0.5 or 1 mg at a time all the way down to 0.5 per day before I was done with prednisone. I agree that no 2 cases of PMR are the same.......I'm also looking forward to the day I'm done with all of this. Keep taking care of yourself and be as well as you can be!

cj762 | @cj762 | Sep 16 10:16am

In reply to @potterywoman "@p0rtia I find your remark about getting a boost of energy around 4:00 pm interesting. I..." + (show)

@potterywoman I too have a window just about every day that appears somewhere between 3 pm and 7 pm almost daily. That is usually my best time of day to plan for any activity. ( housework, meal prep, shopping, walking etc.). Have no idea why as I have always been a morning person. Pain and stiffness too great now in AM to get moving quickly.

gabbag | @gabbag | Sep 16 1:44pm

In reply to @bkearbey1 "@gabbag hope you can plow through the pain… I had some minor pain probably 3-4 weeks..." + (show)

@bkearbey1 onward indeed. Quote by Murakami, “Pain is inevitable. Suffering is optional.” Resonates with me. Choosing to live life with wonder, joy and awe in spite of what life hands me is my choice. Choosing to continue to do what needs to be done, do it well, be present, help those I can.. that’s my choice. The pain is just something to figure out how to manage. Sleep is definitely a priority for me as well. Thanks for your insight and sharing your experience.