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.

@colleenyoung

Hi all PMR-ers. Many of you have had the pleasure of crossing virtual paths with @tsc (Teri). Today Teri is our featured Member Spotlight. I think you'll enjoy @johnbishop's interview with Teri and getting to know more about how she finds balance, her interest in history and textile arts, and more:
- "Let Your Breath Find You": Meet @tsc https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/let-your-breath-find-you-meet-tsc/

Jump to this post

By the way, @johnbishop was spotlighted a while back. Check out his interview here:
- Searching for Answers With Others: Meet @johnbishop https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/searching-for-answers-with-others-meet-johnbishop/

REPLY
@ajmencke

I am considering whether or not to get the 2nd Covid shot. I got the first shot last February. Within a couple of days I was in misery. It took until April to figure out it was PMR so I was going on and off of prednisone and in and out of pain during that time. I talked with the rheumatologist about getting the second shot. He said I can when I am below 5 mg per day of prednisone and if it got the PMR increasing I can increase the prednisone 1 mg/week. I'm not sure what I'd like to do - take the second shot or just continue sequestering. What do we know about the effect of taking the vaccine on PMR? Does it cause a flare up? If so, how bad is the flare up? Are there any research data on this topic? I'm suspecting we're such a small percentage of the population that there hasn't been much research done.

Jump to this post

I got my first two Moderna vax's in February. Pre-PMR. No apparent issues. Then I was diagnosed with PMR in September. Until getting on this group, it never occurred to me that what I thought was a flareup of back issues which I've dealt with since my 30's (LONG time), might instead have been my introduction to PMR. But I cannot remember exactly when that happened - wish I could. Before August, I know - before I started having other pain issues in my arm and shoulder. Anyway, once I was diagnosed and got on this group, I made up my mind that I wasn't getting the booster. But my primary care doctor insisted that I already have PMR, and am immune compromised, and I should really get the booster now for sure. At that time I was on 10mg. of prednisone and completely out of pain. Got the booster against my better judgement. Again, no issues with it. Subsequently started going to a rheumatologist. He said that because I was on the pred., the booster would most likely be LESS effective than it might have been had I not been on the pred. I guess the moral of this story is, while much of what we all are dealing with is common and expected, but each of us have a different story. The more we can glean from this group, the more we understand what we can expect, and how we might choose to deal with it.

REPLY
@tsc

Hi @fazz, are you being treated for PMR? With appropriate meds, the symptoms should disappear. I have both PMR and its companion disorder, Giant Cell Arteritis, and am virtually symptom free, after seven months of taking prednisone in tapered dosages, but I was not diagnosed for a year. One thing I have learned is to let go, not pressure myself to do too much and stop dwelling in the realm of negativity. How are you managing?

Jump to this post

Thanks for the advice Teri. With the help of my doctor, I'm working through tapering off the prednisone and supplementing it with other RX solutions. The biggest change I'm tackling is the letting go part. I've got a highly stressful job that must be addressed. It's ok for change, in that I'm 62 and can actually afford to cut back and ease into retirement. Saying it is much easier than doing it 😉 It's hard to take a lifestyle that has driven me for over 40 years and just turn it off. I'm sure I'll find something new to pour myself into that does not involve stress.

REPLY
@fazz

Thanks for the advice Teri. With the help of my doctor, I'm working through tapering off the prednisone and supplementing it with other RX solutions. The biggest change I'm tackling is the letting go part. I've got a highly stressful job that must be addressed. It's ok for change, in that I'm 62 and can actually afford to cut back and ease into retirement. Saying it is much easier than doing it 😉 It's hard to take a lifestyle that has driven me for over 40 years and just turn it off. I'm sure I'll find something new to pour myself into that does not involve stress.

Jump to this post

Good luck, fazz. Maybe go where your interests or passions take you and give yourself the time to find what you want to do. I had a stessful job as well. When I retired I didn't want to do anything similar. All my health problems came up after retirement, which gave me the time to take care of them. I cannot imagine working with PMR, though. That would have been so difficult. All the best, Teri

REPLY
@fazz

I was diagnosed with PMR 10 months ago and I’m in discovery on how to manage a quality of life while living with what PMR represents.

Jump to this post

I have been plagued with this for over 5 months, but just diagnosed last week. Put on 40 mg of Prednisone last Monday and it's a 160 degree change for me. Improvement started the next day with progress right up to this morning. It was debilitating and now I feel positive and that this will be manageable. Focus on the positive, difficult I know. I am 72 in March and am toying with the idea of returning to retirement as I had returned to the work force last April 2021. We will see after I get this balanced out. All the best to you my friend.

REPLY
@milld835

I have been plagued with this for over 5 months, but just diagnosed last week. Put on 40 mg of Prednisone last Monday and it's a 160 degree change for me. Improvement started the next day with progress right up to this morning. It was debilitating and now I feel positive and that this will be manageable. Focus on the positive, difficult I know. I am 72 in March and am toying with the idea of returning to retirement as I had returned to the work force last April 2021. We will see after I get this balanced out. All the best to you my friend.

Jump to this post

I have vivid memory of the wonderful relief that the original does of Prednisone gave. Happy that you've been diagnosed and found the same relief.

REPLY
@fazz

I have vivid memory of the wonderful relief that the original does of Prednisone gave. Happy that you've been diagnosed and found the same relief.

Jump to this post

It really is my New Year miracle. 🙂

REPLY

Diagnosed with PMR in Nov. Rec’d. Hi-dose flu vaccine in mid Oct. which I believe left me unable to move my legs later that night. Took several weeks to figure out where to go, who to see, etc. Reported on VAERS; very few documented cases. I know I was a healthy 71 y/o prior to receiving the vaccine. Started on 20mg Prednisone and am currently down to 12mg with fingers crossed I can continue decreasing the demon drug without much difficulty. Looking forward to reading others experiences with this affliction.

REPLY

My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune disease, probably to PMR. I am nearly disabled by pain particularly in the mornings. My doctor suggests, however, that even after subsequent testing by a rheumatologist confirms his hunch about PMR, I would not be a good candidate for prednisone insofar as I suffer already with insomnia and depression. My question is whether there is any other treatment for PMR besides a steroid such as prednisone? I'm thinking "not", but thought I would ask.

REPLY
@lglindsay3

My orthopedic doctor attributes my pain in shoulders, pelvis & hips, neck, and hands to autoimmune disease, probably to PMR. I am nearly disabled by pain particularly in the mornings. My doctor suggests, however, that even after subsequent testing by a rheumatologist confirms his hunch about PMR, I would not be a good candidate for prednisone insofar as I suffer already with insomnia and depression. My question is whether there is any other treatment for PMR besides a steroid such as prednisone? I'm thinking "not", but thought I would ask.

Jump to this post

Not to discount your physician, but I think untreated PMR can cause insomnia and depression.

REPLY
Please sign in or register to post a reply.