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?

@johnbishop

@ronhonn that is frustrating to say the least. I would encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday – Friday
507-284-4988

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Thanks! And please understand, I'm not knocking Mayo, because at this point just talking to people who've heard of this condition is a breath of fresh air, I'm just incredibly frustrated with my doctors here in Tallahassee.

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SO HAPPY YOU HAVE A NEW GROUP. THIS IS ALL NEW TO ME AS OF LAST WEEK WHEN MY DIAGNOSIS CAME THRU. I HAD NEVER HEARD OF PMR BEFORE, THIS IS A WHOLE NEW WORLD FOR ME IN MY LATE SEVENTIES (78)!!

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@calicojoy

SO HAPPY YOU HAVE A NEW GROUP. THIS IS ALL NEW TO ME AS OF LAST WEEK WHEN MY DIAGNOSIS CAME THRU. I HAD NEVER HEARD OF PMR BEFORE, THIS IS A WHOLE NEW WORLD FOR ME IN MY LATE SEVENTIES (78)!!

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Hello @calicojoy, Welcome to Mayo Clinic Connect. I also had never heard of polymyalgia rheumatica (PMR) before I was diagnosed at age 64. I'm now soon to be 77 and have had 2 occurrences of what I jokingly like to call the big hurt. Has your doctor or rheumatologist started you on any treatment?

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@johnbishop

Hello @calicojoy, Welcome to Mayo Clinic Connect. I also had never heard of polymyalgia rheumatica (PMR) before I was diagnosed at age 64. I'm now soon to be 77 and have had 2 occurrences of what I jokingly like to call the big hurt. Has your doctor or rheumatologist started you on any treatment?

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Yes !! The big PREDNISONE pills 60mg in the morning. Starting on 2/11, I feel so much better, still start my days out slow but can get going by 11am!!😎

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@calicojoy

Yes !! The big PREDNISONE pills 60mg in the morning. Starting on 2/11, I feel so much better, still start my days out slow but can get going by 11am!!😎

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@calicojoy did your doctor mention anything about trying to taper off of prednisone after awhile? Just curious as I was started on 20 mg prednisone for both occurrences and it took me 3 years to taper off of prednisone with my first occurrence of PMR and 1-1/2 years the second time.

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THIS IS THE NEW APPROACH TO START HIGH AND TAPER DOWN SLOWLY WITH THE DOSES.

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@calicojoy

THIS IS THE NEW APPROACH TO START HIGH AND TAPER DOWN SLOWLY WITH THE DOSES.

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Good Luck! I also was started on 60 mg almost 1 year ago. I could hardly believe that I felt like a new creation in less that 24 hours. I am currently on 6 mg each morning. On March 1 will decrease to 5 mg using the dead slow, nearly stop protocol. When I get to new dose every day I will check with my rheumatologist and we will decide if I should remain on the lower (5mg) for a week (or more) prior to
decreasing to 4 mg. I will keep you posted on my progress. Thanks again for this opportunity to share good stories and some of those
problems that seem to "come and go."

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@maija

Good Luck! I also was started on 60 mg almost 1 year ago. I could hardly believe that I felt like a new creation in less that 24 hours. I am currently on 6 mg each morning. On March 1 will decrease to 5 mg using the dead slow, nearly stop protocol. When I get to new dose every day I will check with my rheumatologist and we will decide if I should remain on the lower (5mg) for a week (or more) prior to
decreasing to 4 mg. I will keep you posted on my progress. Thanks again for this opportunity to share good stories and some of those
problems that seem to "come and go."

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THANKS FOR THE SUPPORT!! I WAS OUT IN MY GARDEN THIS AFTERNOON, LOVED IT!!😍

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@calicojoy

THANKS FOR THE SUPPORT!! I WAS OUT IN MY GARDEN THIS AFTERNOON, LOVED IT!!😍

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And I was out in the snow! How diverse the weather conditions that our entire being is subjected to on a daily basis..

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Hi all. I was taking 5 mg as that had worked, but was still symptomatic. I had to wait about 6 weeks to see a rheumatologist. She checked and my CRP and sed rate were elevated. She suggested I go to 10 mg for at least a month, then slow taper. Symptoms totally disappeared. I do take 5 mg AM, 5mg PM which helps me be a symptomatic all day long. She ran lots of other labs I had never had, which were all normal, except for my WBC which have been low for 18 years (cause unknown and creates no problems). I did have an unusual toothache right before I increased the dose. I saw the dentist, no problem with tooth, now wondered if it was arteritis?? I will check with rheumatologist, no headaches, no jaw pain.

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Maybe start here:-
"Careful 'tapering' is needed if you have been taking Prednisone orally.
But, there are no set rules.
An example of Prednisone Tapering:-
After 2 days at 40+ mg per day; decrease dose to 35 mg for 2 days.
Then 30 mg for 2 days.
Then 25 mg for 2 days
Then 20 mg for 2 days
Then reduce dosage by 2.5 mg every 2 days.
When 10 mg dose is reached, decrease in 1-mg every 2 days
If symptoms flare up, increase dosage immediately until relief.
Prednisone works best if taken at least twice per day.
(Even 10mg or 20 mg can 'wear off' after 12+ hours).
Only the patient can determine appropriate dosage/frequency.

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Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

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@jth4d

Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

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Indeed a familiar story! The questions: "what did you do?" Then off to PT without a diagnosis expecting the therapist to do something to make the stiffness and pain go away! My cousin had rotor cuff repair, carpal tunnel surgery, then off to the pscyh
doctor to "help her to deal with her problems"! We are our own best advocates — Best of luck and stay strong.

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@jth4d

Hello, I have been reading the descriptions of everyone’s journey with PMR.

I am 73 and have always been very active until last August when I began to experience incredible stiffness in the morning.… then pain in my neck, shoulders and groin and thighs. I joked that I must have fibromyalgia! I was a runner and running became increasingly difficult with swelling and pain in my right knee. The health professionals wanted to know what I did to my knee. I told them “nothing” and that running started being a problem because of neck and shoulder pain. Of course, the knee became the focus of treatment and it was drained and injected with steroids.

In November, I started physical therapy and began daily exercises which were exhausting, although not even that strenuous. I was treated for rotator cuff and hip flexor issues…all viewed as collateral problems from limping around on a bad knee. The therapist advised me not to anything until the inflammation died down. I could not reach above my waist and getting in and out a car, or moving in bed was excruciatingly difficult. Inflammation?!!

Finally, I did a google search for neck, shoulder and hip pain.…and bingo! Here we are. I made an appointment with my PCP. My sed rate and C-reactive protein were markedly elevated. I was started on 15 mg of prednisone which didn’t work and was increased to 20 mg. Tapered to 17.50 mg without success. Alternating 20 and 17.5 also, without success. I am feeling like I might try 17.5 again since I am feeling pretty good.

I am following a strict diet of no sugar, high protein, low salt and 1300 calories a day. I take turmeric, boswelia extract, magnesium and collagen. I had a cheat day last weekend. The sticky steamed rice, apple cider and popcorn? affected me for 2 days! So, I believe diet is important! Before watching my calories, I had gained 4 pounds, that are now gone. I do tire with exertion, but rest and stay active alternately.

Luckily my life, otherwise, is stress free. I am waiting for a rheumatologist appointment, but UVA is not taking new patients and I may have to travel to Richmond, but no word on that yet.

I am also on levothyroxine, which was decreased at the same time. I was keeping my TSH on the low side when I felt great. But now I wonder if that may have triggered this inflammatory response in my body.

Thank-you, for this helpful, informative and supportive group!
Jill

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Hi Jill @jth4d, I would like to add my welcome to Connect along with the other members of this discussion. As @maija said, yours is indeed a familiar story. When I was diagnosed I also had swelling in my right knee and fluid was drained and I received a steroid shot. 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.

Good for you on the diet, I think diet plays a big part. Also, one of the bad side effects for me of the prednisone was weight gain. Staying active helps. You mentioned going back from 17.5 mg to 20 mg and are now feeling good again. You might want to see if you can get some 1 mg tablets which I found quite helpful when tapering down. Then if you are really hurting when you drop to 17.5 bump it up by 1 mg to see if the pain goes away instead of all the way back to 20 mg. My rheumatologist was really helpful for me with tapering suggestions. Has your doctor given you any tapering suggestions?

Liked by calicojoy

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@johnbishop

Hi Jill @jth4d, I would like to add my welcome to Connect along with the other members of this discussion. As @maija said, yours is indeed a familiar story. When I was diagnosed I also had swelling in my right knee and fluid was drained and I received a steroid shot. 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.

Good for you on the diet, I think diet plays a big part. Also, one of the bad side effects for me of the prednisone was weight gain. Staying active helps. You mentioned going back from 17.5 mg to 20 mg and are now feeling good again. You might want to see if you can get some 1 mg tablets which I found quite helpful when tapering down. Then if you are really hurting when you drop to 17.5 bump it up by 1 mg to see if the pain goes away instead of all the way back to 20 mg. My rheumatologist was really helpful for me with tapering suggestions. Has your doctor given you any tapering suggestions?

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Her only suggestion was alternate doses between 20 and 17.5 daily. I only have 5 mg tablets. I will ask her for some one mg tabs. Thanks again!

Did you have any blood tests during your treatment? Are there recommendations for blood work?

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