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.

I’m Ethan, and I’m the moderator of this group. You’ll most likely be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

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?

Hi @johnbishop @jules11 @marilyncarkner @becsbuddy @igolf @kp5450121 @dreamer38 @jimma @beryl @kdmorris @alanbruce @lindapc @rolandhp @kdmorris @kirby @susieflamilngo @beckie @noosat1 @ambershe @sharync @amom7 @rachelp @grammlyn @sallygosse @sidsell1 @dar9216 @pringsmuth @barry51 @anniegal @gll104 @noahs @sammiesarah @digregorioj @redhen @lioness @michelecallahan @suziropiequet @dixiebell @tinkerbell @rogernj67

I’d like to invite you to the new group dedicated to discussions about Polymyalgia Rheumatica.

It’s a space where to ask questions, share tips and learn about managing PMR with each other. Please drop a note to say hi and introduce yourself. What's your experience with PMR? How are you doing today?

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Thanks for starting a PMR Group Ethan @ethanmcconkey! I hope other members with PMR will share their experience and share any tips they have.

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

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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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@ethanmcconkey

Hi @johnbishop @jules11 @marilyncarkner @becsbuddy @igolf @kp5450121 @dreamer38 @jimma @beryl @kdmorris @alanbruce @lindapc @rolandhp @kdmorris @kirby @susieflamilngo @beckie @noosat1 @ambershe @sharync @amom7 @rachelp @grammlyn @sallygosse @sidsell1 @dar9216 @pringsmuth @barry51 @anniegal @gll104 @noahs @sammiesarah @digregorioj @redhen @lioness @michelecallahan @suziropiequet @dixiebell @tinkerbell @rogernj67

I’d like to invite you to the new group dedicated to discussions about Polymyalgia Rheumatica.

It’s a space where to ask questions, share tips and learn about managing PMR with each other. Please drop a note to say hi and introduce yourself. What's your experience with PMR? How are you doing today?

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10mgs/day at one time or schedule 4 x 2.5 megs every 6 hours. What's recommended?;

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@ajp2019

10mgs/day at one time or schedule 4 x 2.5 megs every 6 hours. What's recommended?;

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Hi @ajp2019, I see this is your first post and would like to welcome you to Connect. I have PMR but it's currently in remission so no longer need to take any prednisone. When I was diagnosed I was started at 20mg dosage and took it in the morning. We are all different when it comes to the pain symptoms and I'm pretty sure there are other members here that have split their dosage into a morning/evening time frame. Did you just start taking prednisone or about to start it for your PMR? I would run it by your rheumatologist but think it depends on your pain level from the PMR.

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@johnbishop

Hi @ajp2019, I see this is your first post and would like to welcome you to Connect. I have PMR but it's currently in remission so no longer need to take any prednisone. When I was diagnosed I was started at 20mg dosage and took it in the morning. We are all different when it comes to the pain symptoms and I'm pretty sure there are other members here that have split their dosage into a morning/evening time frame. Did you just start taking prednisone or about to start it for your PMR? I would run it by your rheumatologist but think it depends on your pain level from the PMR.

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Did it raise your blood pressure?
How were you diagnosed?

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@penn1023

Did it raise your blood pressure?
How were you diagnosed?

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@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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I have lower back pain near sacrum. Sed rate and crp were within range.
Which joints were affected in your case?

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@penn1023

I have lower back pain near sacrum. Sed rate and crp were within range.
Which joints were affected in your case?

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@penn1023, the PMR mostly affected my arms, hands and shoulders but I did have some leg and lower back pain just not as bad as the shoulder and arms.

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Did you have any testing with ultrasound or mri? I am in the reading learning phase. Not sure yet if I have it.

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@penn1023

Did you have any testing with ultrasound or mri? I am in the reading learning phase. Not sure yet if I have it.

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Mainly a physical exam by a great rheumatologist and blood tests along with SED rate and CRP tests. Within hours of taking 20mg prednisone the pain was gone.

Liked by penn1023

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@ethanmcconkey

Hi @johnbishop @jules11 @marilyncarkner @becsbuddy @igolf @kp5450121 @dreamer38 @jimma @beryl @kdmorris @alanbruce @lindapc @rolandhp @kdmorris @kirby @susieflamilngo @beckie @noosat1 @ambershe @sharync @amom7 @rachelp @grammlyn @sallygosse @sidsell1 @dar9216 @pringsmuth @barry51 @anniegal @gll104 @noahs @sammiesarah @digregorioj @redhen @lioness @michelecallahan @suziropiequet @dixiebell @tinkerbell @rogernj67

I’d like to invite you to the new group dedicated to discussions about Polymyalgia Rheumatica.

It’s a space where to ask questions, share tips and learn about managing PMR with each other. Please drop a note to say hi and introduce yourself. What's your experience with PMR? How are you doing today?

Jump to this post

Thanks for this group. I’ve had PMR almost 5 years. Initially it was quite painful but the prednisone calmed that. My confusion is that I am on a maintenance dose of 3 mgs and have no pain. But my CRP and Sed rates are way too high. About 38 on the CRP. What makes my markers continue so high? I will now try giving up sugar and low carbs.

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@rayabw

Thanks for this group. I’ve had PMR almost 5 years. Initially it was quite painful but the prednisone calmed that. My confusion is that I am on a maintenance dose of 3 mgs and have no pain. But my CRP and Sed rates are way too high. About 38 on the CRP. What makes my markers continue so high? I will now try giving up sugar and low carbs.

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Hello @rayabw, Welcome to Connect. You ask a good question. Have you discussed it with your doctor? I think it can mean something other than your PMR as a cause but then I'm not a doctor and have no medical training. Here's some information that may explain it for you.

Differential diagnosis of elevated erythrocyte sedimentation rate and C-reactive protein levels: a rheumatology perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5047224/

You mentioned having PMR for almost 5 years and now being on a 3 mg maintenance dosage. Has your doctor ever discussed tapering off of prednisone as a goal? Normally you keep lowering the dosage until you are able to be off with no pain from the PMR.

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@johnbishop

Hello @rayabw, Welcome to Connect. You ask a good question. Have you discussed it with your doctor? I think it can mean something other than your PMR as a cause but then I'm not a doctor and have no medical training. Here's some information that may explain it for you.

Differential diagnosis of elevated erythrocyte sedimentation rate and C-reactive protein levels: a rheumatology perspective
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5047224/

You mentioned having PMR for almost 5 years and now being on a 3 mg maintenance dosage. Has your doctor ever discussed tapering off of prednisone as a goal? Normally you keep lowering the dosage until you are able to be off with no pain from the PMR.

Jump to this post

My rhuemy fells I should stay on the prednisone as long as these numbers are high. I have no side effects at this low dose. Complete blood work doesn’t show any other problems. Maybe my irritable bowel syndrome? An occasional UTi? I’m perplexed. Thank you for the link!

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Has anyone discussed the usefulness of "abatacept" with their doctor?

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