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.

megz | @megz | Aug 17 10:09pm
In reply to @centralflorida "I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently..." + (show)
@centralflorida

I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently mine was pretty advanced (6 weeks since onset), because my doctor started me with 50 mg Prednisone daily. So far it seems to be taking care of most of the pain. Hoping to see a rheumatologist before too long, and see when I can start tapering down. Right now my biggest problem is trying to get sleep. I seem to be averaging about 4 hours a night, even with my doctor's prescription 5 mg. Zolpidem each night. I was accustomed to about 7 hours before starting Prednisone. I don't drink any caffeine except 2 cups of coffee at breakfast.

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It's understandable that you can't sleep on 50mg of prednisone. It's a very high dose for PMR. Most starting doses are 15mg - 25mg and it's reduced fairly quickly down to 10mg, after which reductions are made more slowly. Australia's standard start dose for polymyalgia rheumatica is 15mg. Is there some other reason your doctor has you on such a high prednisone dose?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 18 7:26am
In reply to @centralflorida "I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently..." + (show)
@centralflorida

I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently mine was pretty advanced (6 weeks since onset), because my doctor started me with 50 mg Prednisone daily. So far it seems to be taking care of most of the pain. Hoping to see a rheumatologist before too long, and see when I can start tapering down. Right now my biggest problem is trying to get sleep. I seem to be averaging about 4 hours a night, even with my doctor's prescription 5 mg. Zolpidem each night. I was accustomed to about 7 hours before starting Prednisone. I don't drink any caffeine except 2 cups of coffee at breakfast.

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Hi @centralflorida, You are not alone. There are other members who have shared experience with problems sleeping while taking prednisone. Here's a link to the discussions and comments by other members - https://connect.mayoclinic.org/search/comments/?search=prednisone%20%20can%27t%20sleep. You might also find the following article helpful.

-- Does prednisone cause insomnia? Tips for better sleep:
https://www.medicalnewstoday.com/articles/does-prednisone-cause-insomnia

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1 reply
centralflorida | @centralflorida | Aug 18 11:25am
In reply to @johnbishop "Hi @centralflorida, You are not alone. There are other members who have shared experience with problems..." + (show)
@johnbishop

Hi @centralflorida, You are not alone. There are other members who have shared experience with problems sleeping while taking prednisone. Here's a link to the discussions and comments by other members - https://connect.mayoclinic.org/search/comments/?search=prednisone%20%20can%27t%20sleep. You might also find the following article helpful.

-- Does prednisone cause insomnia? Tips for better sleep:
https://www.medicalnewstoday.com/articles/does-prednisone-cause-insomnia

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Thank, you, John, for your suggestions and referrals to comments that help me.

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noti | @noti | Aug 18 12:00pm
In reply to @centralflorida "I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently..." + (show)
@centralflorida

I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently mine was pretty advanced (6 weeks since onset), because my doctor started me with 50 mg Prednisone daily. So far it seems to be taking care of most of the pain. Hoping to see a rheumatologist before too long, and see when I can start tapering down. Right now my biggest problem is trying to get sleep. I seem to be averaging about 4 hours a night, even with my doctor's prescription 5 mg. Zolpidem each night. I was accustomed to about 7 hours before starting Prednisone. I don't drink any caffeine except 2 cups of coffee at breakfast.

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I don't know if this is helpful or practical since I started at 15 mg. 50 is a high dose so maybe you do have something more severe happening. I found relief with acupuncture, but the problem has been returning recently and I plan to ask him to address it again the next time I see him. Also, you need to find someone knowledgeable! Best of luck.

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formerpaa70 | @formerpaa70 | Aug 18 2:06pm

This is my 3rd occurrence of PMR in 13 years. Currently on 3 mg prednisone but it's not adequate on certain days.
My hands and wrists are v painful but I'm told this is not related to PMR, that it's inflammatory arthritis. I have the classic symptoms of PMR mostly under control, but admit perhaps an increase of 1-2 mgs daily is necessary

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centralflorida | @centralflorida | Aug 18 3:26pm
In reply to @megz "It's understandable that you can't sleep on 50mg of prednisone. It's a very high dose for..." + (show)
@megz

It's understandable that you can't sleep on 50mg of prednisone. It's a very high dose for PMR. Most starting doses are 15mg - 25mg and it's reduced fairly quickly down to 10mg, after which reductions are made more slowly. Australia's standard start dose for polymyalgia rheumatica is 15mg. Is there some other reason your doctor has you on such a high prednisone dose?

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I think it must be due to my blood work. I was pretty non-functional with pain.

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1 reply
wilmingtonemperor | @wilmingtonemperor | Aug 18 5:04pm
In reply to @centralflorida "I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently..." + (show)
@centralflorida

I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently mine was pretty advanced (6 weeks since onset), because my doctor started me with 50 mg Prednisone daily. So far it seems to be taking care of most of the pain. Hoping to see a rheumatologist before too long, and see when I can start tapering down. Right now my biggest problem is trying to get sleep. I seem to be averaging about 4 hours a night, even with my doctor's prescription 5 mg. Zolpidem each night. I was accustomed to about 7 hours before starting Prednisone. I don't drink any caffeine except 2 cups of coffee at breakfast.

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So I am an 83 year old male diagnosed in Jan 23 and on gradually smaller doses of prednisone until October of last year. In October my PCP added a biologic, Kevzara and ended prednisone entirely. On Kevzara until February of this year when it frumpy WBC and had to come off. Now on a non-steroid anti-inflammatory Meloxacam. I feel fine except when first getting up. But after 15 minutes all good. I take it once in the morning. Have no plans to ever take prednisone again.
Good Luck

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2 replies
Teri | @tsc | Aug 18 11:05pm
In reply to @centralflorida "I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently..." + (show)
@centralflorida

I am female, just turned 77 and a few days later was diagnosed with PMR. Apparently mine was pretty advanced (6 weeks since onset), because my doctor started me with 50 mg Prednisone daily. So far it seems to be taking care of most of the pain. Hoping to see a rheumatologist before too long, and see when I can start tapering down. Right now my biggest problem is trying to get sleep. I seem to be averaging about 4 hours a night, even with my doctor's prescription 5 mg. Zolpidem each night. I was accustomed to about 7 hours before starting Prednisone. I don't drink any caffeine except 2 cups of coffee at breakfast.

Jump to this post

Hi @centralflorida, that seems a high dosage of prednisone for PMR - it's usually about 20 mg. I had symptoms of PMR/GCA for a year before diagnosis and was prescribed 40 mg of prednisone to start with a 5 mg taper every two weeks. It did give me insomnia.
I was off prednisone a year and a half, then had a relapse of GCA and started taking 40 mg, but it did not disrupt my sleep this time around. Now I'm down to 5 mg.
Best to see a rheumatologist as soon as you can.

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1 reply
megz | @megz | Aug 19 1:13am
In reply to @centralflorida "I think it must be due to my blood work. I was pretty non-functional with pain." + (show)
@centralflorida

I think it must be due to my blood work. I was pretty non-functional with pain.

Jump to this post

I think most of us would describe ourselves as pretty non-functional with pain when we first got PMR. I couldn't sleep for more than an hour or so with a total night's broken sleep of 4-5hrs, woken continually with pain and unable to turn over in bed. A week of prescribed non steroidal anti-inflammatory drug (NSAID) didn't help and inflammation markers were elevated so in desperation I started on 15mg prednisolone, two months after PMR struck. By then, some days I couldn't even lower myself onto the toilet. There was good improvement after a week or so on pred. We're all different and so are our doctors, but I'm still wondering why your dose is so high, considering the short and long-term side effects of the drug. I'm not pushing to get an answer you don't have, just surprised.

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1 reply
centralflorida | @centralflorida | Aug 19 6:00am
In reply to @wilmingtonemperor "So I am an 83 year old male diagnosed in Jan 23 and on gradually smaller..." + (show)
@wilmingtonemperor

So I am an 83 year old male diagnosed in Jan 23 and on gradually smaller doses of prednisone until October of last year. In October my PCP added a biologic, Kevzara and ended prednisone entirely. On Kevzara until February of this year when it frumpy WBC and had to come off. Now on a non-steroid anti-inflammatory Meloxacam. I feel fine except when first getting up. But after 15 minutes all good. I take it once in the morning. Have no plans to ever take prednisone again.
Good Luck

Jump to this post

Hi, thanks for your encouraging news! My big goal today is to get an appointment with a rheumatologist. I keep reading about people whose bones get so porous from taking Prednisone, that they get stress fractures from something as simple as bending over. I don't want that to happen to me if I can possibly prevent it, so hoping a rheumatologist can get me a viable plan for proceeding.

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