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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.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 6 8:00am
In reply to @bandorino "Hello! I was officially diagnosed with PMR on March 17 this year. Late January, started having..." + (show)
Profile picture for bandorino @bandorino

Hello! I was officially diagnosed with PMR on March 17 this year. Late January, started having burning pain around my knees and neck and shoulder pain and stiffness. Thought it was due to bad pillows and awkward sleeping positions. Spent a small fortune on specialty pillows. That didn’t help. Pain and stiffness got so bad I’d be in tears trying to get myself out of bed in the mornings. I’d had CMC surgery on my left nasal thumb joint December 11 and thought I must have somehow overcompensated for that hand being braced. I felt like thd TinMan unable to lift my arms, turn my head. I’d warm up heating pads and drape then around my shoulders and knees in the mornings. I was relieved to be able to put a name on what I was dealing with. At 67 yrs old, I was not wanting to chalk it up to “old age” as this seemed to come out of left field.

So now I’m seeing a Rheumatologist and on the 2nd week of a 28 day course of decreasing dosage of prednisone. (Started last week 20 mg daily. This week 15mg daily) Dr. also ordered a scrip for hydroquinone I think it’s called. Is this a standard routine or first line approach to the management of pain and stiffness?
I’ve noticed that the pain and stiffness had lessened a lot the first several days on the 20mg then seems to shift location.
I want to add that I’ve been wondering if stress from life changes could have triggered PMR.
My father in law died last October, my mom, who had Alzheimer’s and was in assisted living, fell last summer, broke her hip, and eventually died last November. I’d had the thumb surgery early December, my sister slipped on black ice and broke her hip after that. Then in mid January I had to have dental surgery! Everything everywhere all at once!

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Welcome @bandorino, Sorry to hear you joined the PMR club. It's not a lot of fun dealing with the different symptoms but you will find a lot of support here on Connect. I do think stress can play a part in the disease but each of us are different when it comes to dealing with the pain. My Mayo rheumatologist was great at working with me on a tapering schedule and suggested I keep a daily journal of my prednisone dose and my level of pain when I woke up each morning before taking my prednisone dose for the day. This allowed me to adjust my tapering schedule if needed to control the pain. There are many different discussions in the PMR support group that you may find helpful. Here's a link that lists the discussions in the PMR group related to "stress" - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

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pdxmac | @pdxmac | Apr 6 10:50am

I think many of us on this site would agree that stress is a huge contributor. One of my many adaptations to deal with PMR has been to try to manage my life to be more stress-free. Even good stress, like my son's wedding, contributed to a backslide.
The pain journal is great advice, and it's wonderful that you have a rheumatologist. Just remember you'll always need to advocate for yourself and be your own best judge of how and when to taper. Also do your own research because there are other alternatives to steroids if they don't work for you.
Good luck! You'll find lots of helpful people on this forum.

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marciai | @marciai | Apr 7 3:27pm

I was diagnosed with PMR in July 2024 and referred to a rheumatologist. I started on 15mg/day of prednisone which eliminated nearly all of my pain within a day or two. I tapered off at a rate of 5/mg the first month, and then 1mg/month for the following months. I experienced a flare at 4mg/day which resulted in returning to 10mg/day. I have been doing a very slow taper for more than a year and am currently at 1mg/day. I had been doing reasonably well at that level with some morning pain and stiffness that resolved by mid-day until about 3 weeks ago. While traveling I began experiencing pain in my sternum, ribs and difficulty taking in a deep breath without pain. After ruling out heart and similar issues, it was suggested that I may be experiencing costochronditis and should talk to my rheumatologist about that. I am now back in town and have an appointment tomorrow, and am interested in hearing from anyone who has experienced a similar issue. Thank you.

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2 replies
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kjoed53 | @kjoed53 | Apr 8 9:34am
In reply to @marciai "I was diagnosed with PMR in July 2024 and referred to a rheumatologist. I started on..." + (show)
Profile picture for marciai @marciai

I was diagnosed with PMR in July 2024 and referred to a rheumatologist. I started on 15mg/day of prednisone which eliminated nearly all of my pain within a day or two. I tapered off at a rate of 5/mg the first month, and then 1mg/month for the following months. I experienced a flare at 4mg/day which resulted in returning to 10mg/day. I have been doing a very slow taper for more than a year and am currently at 1mg/day. I had been doing reasonably well at that level with some morning pain and stiffness that resolved by mid-day until about 3 weeks ago. While traveling I began experiencing pain in my sternum, ribs and difficulty taking in a deep breath without pain. After ruling out heart and similar issues, it was suggested that I may be experiencing costochronditis and should talk to my rheumatologist about that. I am now back in town and have an appointment tomorrow, and am interested in hearing from anyone who has experienced a similar issue. Thank you.

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@marciai
Interesting and helpful. I've felt like I can't take a deep breath for a couple of weeks now. I just saw my primary yesterday and she verified that it's nothing with my lungs but the feeling persists, and only on the left side of my chest. I didn't strain any muscle because with this PMR I can't do any lifting or strenuous activity.

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2 replies
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caroljeand | @caroljeand | Apr 8 10:59am

Yes, I was diagnosed with that about a year before the PMR diagnosis. I thought I strained myself at TRX class. I took the meds and refrained from lifting or any strenuous exercise from several weeks. Had never heard of it before that. Wondering if has any relationship to PMR?
My primary care doctor took care of it as I had no rheumatologist at the time.

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marciai | @marciai | Apr 8 3:17pm
In reply to @kjoed53 "@marciai Interesting and helpful. I've felt like I can't take a deep breath for a couple..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
Interesting and helpful. I've felt like I can't take a deep breath for a couple of weeks now. I just saw my primary yesterday and she verified that it's nothing with my lungs but the feeling persists, and only on the left side of my chest. I didn't strain any muscle because with this PMR I can't do any lifting or strenuous activity.

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@kjoed53 Saw my rheumatologist today and she doesn’t think it’s pmr or costochondritis, although my inflammation markers are high again. Going back up to 5 mg/day and having chest x-rays done to be followed with appt with my primary.Would love to get some answers.

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2 replies
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caroljeand | @caroljeand | Apr 8 3:57pm
In reply to @kjoed53 "@marciai Interesting and helpful. I've felt like I can't take a deep breath for a couple..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
Interesting and helpful. I've felt like I can't take a deep breath for a couple of weeks now. I just saw my primary yesterday and she verified that it's nothing with my lungs but the feeling persists, and only on the left side of my chest. I didn't strain any muscle because with this PMR I can't do any lifting or strenuous activity.

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@kjoed53
It may be possible to have costocronditis (sp??) without straining yourself since it is an inflammation. You should check it out. I can’t remember if my episode was one sided…. I think it may have been.
Hope you get to the bottom of it. Doctor ordered a chest xray to rule out lung issues.

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kjoed53 | @kjoed53 | Apr 8 4:04pm
In reply to @marciai "@kjoed53 Saw my rheumatologist today and she doesn’t think it’s pmr or costochondritis, although my inflammation..." + (show)
Profile picture for marciai @marciai

@kjoed53 Saw my rheumatologist today and she doesn’t think it’s pmr or costochondritis, although my inflammation markers are high again. Going back up to 5 mg/day and having chest x-rays done to be followed with appt with my primary.Would love to get some answers.

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@marciai
Are there any blood results that indicate a hematologist should take a look? My rheumatologist is concerned that I may have MGUS so he has referred me to a friend of his in hematology.

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3 replies
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tweetypie13 | @tweetypie13 | Apr 8 5:58pm
In reply to @kjoed53 "@marciai Are there any blood results that indicate a hematologist should take a look? My rheumatologist..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
Are there any blood results that indicate a hematologist should take a look? My rheumatologist is concerned that I may have MGUS so he has referred me to a friend of his in hematology.

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@kjoed53 I was diagnosed with MGUS in late 1990’s
It has had no issue with my PMR, am checked annually.
Good luck

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jabrown0407 | @jabrown0407 | Apr 9 5:43am
In reply to @marciai "I was diagnosed with PMR in July 2024 and referred to a rheumatologist. I started on..." + (show)
Profile picture for marciai @marciai

I was diagnosed with PMR in July 2024 and referred to a rheumatologist. I started on 15mg/day of prednisone which eliminated nearly all of my pain within a day or two. I tapered off at a rate of 5/mg the first month, and then 1mg/month for the following months. I experienced a flare at 4mg/day which resulted in returning to 10mg/day. I have been doing a very slow taper for more than a year and am currently at 1mg/day. I had been doing reasonably well at that level with some morning pain and stiffness that resolved by mid-day until about 3 weeks ago. While traveling I began experiencing pain in my sternum, ribs and difficulty taking in a deep breath without pain. After ruling out heart and similar issues, it was suggested that I may be experiencing costochronditis and should talk to my rheumatologist about that. I am now back in town and have an appointment tomorrow, and am interested in hearing from anyone who has experienced a similar issue. Thank you.

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@marciai Please go to the top of the PMR Chat Room and enter "costochondritis" in the search field if you have not done this already. If you go to the top of the Connect home page you will find everywhere inside of all the discussion where the word is used - jic you do that by mistake. Anway - unfortunately many people do not read this site daily and you mentioned you wanted the info by today. I hope this not gets to you in time to make a difference.

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