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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 | May 17 7:30am
In reply to @melinda4 "I was diagnosed with PMR in January. I’m in my late 50’s, female and work full..." + (show)
Profile picture for melinda4 @melinda4

I was diagnosed with PMR in January. I’m in my late 50’s, female and work full time. I started with 15 mg of prednisone and have now tapered to 8mg. I feel like I’m feeling well physically. My problem is that I’m really tired as well as anxious a lot of the time. I’m also having disturbing dreams regarding my health. Is anyone else dealing with these types of issues? Is it due to the prednisone?

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Hello @melinda4, Welcome to Connect. Prednisone does have the side effects you mentioned for some people. I have had some of the same types of issues when taking prednisone for the two times my PMR was active. Here are a few other discussions if you want to learn what others have shared:
-- Feeling tired! Do others with PMR feel significantly more tired?
https://connect.mayoclinic.org/discussion/feeling-tired/
-- Several members have mention "vivid dreams". Here's a link to the list of comments - https://connect.mayoclinic.org/search/

Have you talked with your doctor or rheumatologist about the symptoms to see if they might have some suggestions?

REPLY
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retiredphil | @retiredphil | May 17 12:55pm
In reply to @mave14 "Hello, I was diagnosed with PMR in late fall of 2025. At that point it took..." + (show)
Profile picture for mave14 @mave14

Hello, I was diagnosed with PMR in late fall of 2025. At that point it took 5 minutes to get out of bed using a walker to pull myself up. I had to use the walker to get around the house as well. Once diagnosed, I started at 15mg prednisone and I'm now on 7mg. I'm having some pain in my hips and shoulders but not enough to ask for an increase of prednisone (rheumatologist is aware). In January of 2025 I starting treatment for osteoporosis (Evenity). I started having dispersed pain but attributed it to the shots (2 shots once a month for 1 year) - I stopped the shots after 9 months because of the pain. At that point I was diagnosed with PMR. I think the shock to my body from the shots is what brought on the PMR. I have no way to prove it but I did contact Amgen and they put it in their database. I also left a note on the osteoporosis forum. Like everyone, I want off of the prednisone but I truly love walking, driving, socializing - my mobility! I'm able to get a DEXA scan in July and I've got my fingers crossed the Evenity helped my, off the charts (literally), osteoporosis.

On a more shallow note but one that is difficult socially, I'm losing my hair. Luckily I have enough to put it up and I use Toppik to cover the balding spots on the top of my head. Oh, and don't get me started on the size of my eye bags!

FYI - I had been decreasing 1 mg every two weeks but saw my rheumatologist a few weeks ago and asked if I can stay where I am for a while because my granddaughter is getting married on 6/6 and I don't want to risk a flare up. He said it was best not to decrease the prednisone when there is a large family obligation or you are traveling.

Best of luck everyone.

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@mave14 The standard for tapering is 1mg per month below 10mg not 1mg every two weeks.

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1 reply
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mave14 | @mave14 | May 17 3:14pm
In reply to @retiredphil "@mave14 The standard for tapering is 1mg per month below 10mg not 1mg every two weeks." + (show)
Profile picture for retiredphil @retiredphil

@mave14 The standard for tapering is 1mg per month below 10mg not 1mg every two weeks.

Jump to this post

@retiredphil
I have not been tapering at 1mg per month on my own. I have done it under my rheumatologist's instructions. I'm curious where you found the information that states 1mg per month below 10mg. I'm not planning to taper down for about a month to avoid a flare up while traveling and would like to study up on the tapering schedule you mention before I start up again. I've had difficulty in the past when tapering down and I'm wondering if the schedule you mention might be a better fit for me going forward. Thank you.

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4 replies
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mave14 | @mave14 | May 17 3:28pm
In reply to @melinda4 "I was diagnosed with PMR in January. I’m in my late 50’s, female and work full..." + (show)
Profile picture for melinda4 @melinda4

I was diagnosed with PMR in January. I’m in my late 50’s, female and work full time. I started with 15 mg of prednisone and have now tapered to 8mg. I feel like I’m feeling well physically. My problem is that I’m really tired as well as anxious a lot of the time. I’m also having disturbing dreams regarding my health. Is anyone else dealing with these types of issues? Is it due to the prednisone?

Jump to this post

@melinda4
I had vivid dreams when I first started prednisone. Not anything specific like you are having, just vivid, and some were frightening. I was exhausted for months off and on. I'm 76 and work part time from home. I don't think I could work full time. If I don't pace myself, I get exhausted. I do have other health concerns but I don't think they have anything to do with the exhaustion because I didn't have that type of issue until I got PMR and then started prednisone. I've been on 7mg for about a month and I'm doing a lot better at present. I'm sorry to read that you got it so young. Good luck going forward.

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pdxmac | @pdxmac | May 17 4:15pm

Fatigue and depression are often correlated with PMR, though most of us don't hear about that from our doctors. We are in unknown territory with this disease so the anxiety and bad dreams seem connected. You definitely have to find your own joy, wherever you can!

REPLY
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tweetypie13 | @tweetypie13 | May 17 8:15pm
In reply to @mave14 "@retiredphil I have not been tapering at 1mg per month on my own. I have done..." + (show)
Profile picture for mave14 @mave14

@retiredphil
I have not been tapering at 1mg per month on my own. I have done it under my rheumatologist's instructions. I'm curious where you found the information that states 1mg per month below 10mg. I'm not planning to taper down for about a month to avoid a flare up while traveling and would like to study up on the tapering schedule you mention before I start up again. I've had difficulty in the past when tapering down and I'm wondering if the schedule you mention might be a better fit for me going forward. Thank you.

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@mave14 generally, many of us have been told by their Dr. to not taper more than 10% per time because it is too much for your body to,handle.

REPLY
1 reply
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mave14 | @mave14 | May 17 9:56pm
In reply to @mave14 "@retiredphil I have not been tapering at 1mg per month on my own. I have done..." + (show)
Profile picture for mave14 @mave14

@retiredphil
I have not been tapering at 1mg per month on my own. I have done it under my rheumatologist's instructions. I'm curious where you found the information that states 1mg per month below 10mg. I'm not planning to taper down for about a month to avoid a flare up while traveling and would like to study up on the tapering schedule you mention before I start up again. I've had difficulty in the past when tapering down and I'm wondering if the schedule you mention might be a better fit for me going forward. Thank you.

Jump to this post

I wrote 1mg per month in error, I meant 1mg every two weeks.

REPLY
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mave14 | @mave14 | May 17 10:00pm
In reply to @mave14 "@retiredphil I have not been tapering at 1mg per month on my own. I have done..." + (show)
Profile picture for mave14 @mave14

@retiredphil
I have not been tapering at 1mg per month on my own. I have done it under my rheumatologist's instructions. I'm curious where you found the information that states 1mg per month below 10mg. I'm not planning to taper down for about a month to avoid a flare up while traveling and would like to study up on the tapering schedule you mention before I start up again. I've had difficulty in the past when tapering down and I'm wondering if the schedule you mention might be a better fit for me going forward. Thank you.

Jump to this post

@mave14
I typed 1mg every month in error. I should have typed 1mg every 2 weeks.

REPLY
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mave14 | @mave14 | May 17 10:03pm
In reply to @tweetypie13 "@mave14 generally, many of us have been told by their Dr. to not taper more than..." + (show)
Profile picture for tweetypie13 @tweetypie13

@mave14 generally, many of us have been told by their Dr. to not taper more than 10% per time because it is too much for your body to,handle.

Jump to this post

@tweetypie13
Thank you. Do you know if there is medical literature that would explain the standard tapering schedule? Something I could share with my doctor.

REPLY
3 replies
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tweetypie13 | @tweetypie13 | May 17 10:58pm
In reply to @mave14 "@tweetypie13 Thank you. Do you know if there is medical literature that would explain the standard..." + (show)
Profile picture for mave14 @mave14

@tweetypie13
Thank you. Do you know if there is medical literature that would explain the standard tapering schedule? Something I could share with my doctor.

Jump to this post

@mave14 All tapering has been Dr or this blog. Basically, you are your own best advocate. Pain free for a week or more . The lower the dose the longer pain free before next drop.

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