1. < Polymyalgia Rheumatica (PMR)

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.

suzivester | @suzivester | Sep 18, 2023

I’ve had PMR symptoms for about a year now but wasn’t diagnosed until January. I’ve been on prednisone since then and have been tapering off for a few months. Down to 5mg a day. Pain and weakness are returning but more tolerable than at first. My hair is thinning noticeably and I wonder if it’s from the PMR or the steroids? Any thoughts?

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suetex | @suetex | Sep 19, 2023

Been awhile since I posted on this section since things have been quiet with the PMR but I think it is back, along with my Sjogren's. I am to start Rinvoq in a couple of days (for Crohn's and RA). We will see what it does with the pain.

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1 reply
1sunny | @1sunny | Sep 22, 2023
In reply to @jules11 "I was diagnosed with PMR 12 months ago and initially prescribed 20mgs of prednisolone which worked..." + (show)
@jules11

I was diagnosed with PMR 12 months ago and initially prescribed 20mgs of prednisolone which worked almost instantly. I began the slow (although I now realise not slow enough) taper to 4mgs in July and experienced my first flare, so after some mucking about I finally increased to 10mgs and now I am on 7.5mgs. I have learnt that once below 10mgs, one should only reduce by .5mg at a time. I couldn’t believe that .5 would make a difference but it really does. I will stay at 7.5mgs pred until after Christmas and then attempt to taper some more.

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My rheumatologist slowed my taper way down. Hope this works. toggling back and forth between comfort and misery is no fun. I was kind of treating the taper as a test of endurance, rather than a reality to be dealt with carefully. Lessons life gives us!

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issyb | @issyb | Sep 23, 2023

My hair is thinning as well. I do believe it’s from the prednisone!
Hopefully after we are off of it we will have some regrowth.

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1 reply
etb2 | @etb2 | Sep 23, 2023
In reply to @johnbishop "@penn1023 the prednisone didn't raise my blood pressure. In addition to the PMR being diagnosed, I..." + (show)
@johnbishop

@penn1023 the prednisone didn't raise my blood pressure. In addition to the PMR being diagnosed, I was already on blood pressure medication for hypertension and high BP. I can't say that the prednisone made it any worse. A rheumatologist diagnosed my PMR but I'm not sure their is a specific test that identifies that you have PMR although they do use two blood tests as indicators -- erythrocyte sedimentation rate (SED rate test) and C-reactive protein (CRP test). Mayo Clinic has more information here on diagnosis and treatment:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

What are your symptoms? Mine started with really stiff and painful joints and got so bad that I couldn't walk which is when I went to the doctor the first time. In retrospect I wish I would have went to the doctor at the first sign and not let it get so bad. The only side effects I had from the prednisone the first time it occurred was a significant weight gain. When the second occurrence came about 6 years after I was able to get off of prednisone, I was more aware of the weight gain problem and made some lifestyle diet and more mild exercise changes to help control the weight gain. I was able to keep it in the 5 to 10 lb range which was easier to lose after getting off of prednisone.

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Please tell me what this disease is. I've never heard of it but am constantly being put on Prednisone. I've been told I have secondary polycethemia. Is that different from polycethemia vera?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 23, 2023
In reply to @etb2 "Please tell me what this disease is. I've never heard of it but am constantly being..." + (show)
@etb2

Please tell me what this disease is. I've never heard of it but am constantly being put on Prednisone. I've been told I have secondary polycethemia. Is that different from polycethemia vera?

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Hello @etb2, Hope this answers your question.

"Primary polycythemia is caused by an abnormality of the cells in the bone marrow that form red blood cells. Secondary polycythemia is caused by a disorder originating outside of the bone marrow that causes overstimulation of the normal bone marrow, leading to an overproduction of red blood cells."
--- An Overview of Secondary Polycythemia - An Overproduction of Red Blood Cells Caused by Health Disorders: https://www.verywellhealth.com/secondary-polycythemia-copd-complications-914682

There is a discussion that you may want to join post any questions you might have:
--- Polycythemia: Primary or Secondary?: https://connect.mayoclinic.org/discussion/polycythemia-primary-or-secondary/

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Teri | @tsc | Sep 24, 2023
In reply to @issyb "My hair is thinning as well. I do believe it’s from the prednisone! Hopefully after we..." + (show)
@issyb

My hair is thinning as well. I do believe it’s from the prednisone!
Hopefully after we are off of it we will have some regrowth.

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Hi @issyb, my hair thinned when I had symptoms of PMR and stayed thin when I started using prednisone. I've been off prednisone nearly a year and my hair is thick again.

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ccarrasca | @ccarrasca | Sep 25, 2023

I’m 79 retired nurse. Diagnosed 8 years ago and have been on low dose steroids since. Recently stained my back muscles and having jabbing pains with certain turning or reaching movements. Will these muscle’s ever be pain free?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 25, 2023
In reply to @ccarrasca "I’m 79 retired nurse. Diagnosed 8 years ago and have been on low dose steroids since...." + (show)
@ccarrasca

I’m 79 retired nurse. Diagnosed 8 years ago and have been on low dose steroids since. Recently stained my back muscles and having jabbing pains with certain turning or reaching movements. Will these muscle’s ever be pain free?

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Hi @ccarrasca, Welcome to Connect. 8 years is a long time for an occurrence of PMR. I've had two separate occurrences of PMR. The first one lasted 3 and half years before I could taper off of prednisone and then it returned 6 years later and it took me 1 and a half years to taper off the second time. Both times I was started with 20 mg prednisone dose. Do you think there is a possibility that the jabbing pains are not related to PMR and possibly due to a pulled muscle or injury? Have you discussed the pains with your rheumatologist or doctor?

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1sunny | @1sunny | Sep 26, 2023
In reply to @ccarrasca "I’m 79 retired nurse. Diagnosed 8 years ago and have been on low dose steroids since...." + (show)
@ccarrasca

I’m 79 retired nurse. Diagnosed 8 years ago and have been on low dose steroids since. Recently stained my back muscles and having jabbing pains with certain turning or reaching movements. Will these muscle’s ever be pain free?

Jump to this post

It is quite possible that your pains are related to the strained back muscles. I cannot speak to PMR pain patterns, but those you describe are like what my my clients (also 79, been a highly trained masseuse for 50 years) experience with back strain injuries. It might be a good idea to get a referral to physical therapy from your primary.

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