Does PMR go away permanently?

Posted by pawprintpeg @pawprintpeg, Jun 25 6:51am

I’m newly prednisone free and oh boy I am sore and miserable but I think I can do this. I sole-speak to myself constantly saying, “Come on body let’s reset”!! Now I’m reading it doesn’t go away but only goes into remission. 😭

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Hi, sorry but not good news. I first had PMR in 2022 and tapered off prednisone in a year. I was recently diagnosed with it again.

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Profile picture for scpartain @scpartain

I'm enjoying my second remission, which has lasted over five years with no flares or relapses. I don't need any medications and I no longer see a rheumatologist. Once I achieved remission, the rheumatologist advised that I didn't need to see him any more and indicated that avoiding strenuous exercise, especially stair-climbing might help prevent relapse. My first remission lasted thirteen years. Some people are one and done; I'm hoping I'm two and done.

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@scpartain
I find your comment about stair climbing interesting. My tapering problems always involve upper leg pain particularly with stairs.

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Profile picture for pmrsuzie @pmrsuzie

@scpartain
I find your comment about stair climbing interesting. My tapering problems always involve upper leg pain particularly with stairs.

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@pmrsuzie When my rheumatologist suggested that vigorous exercise and particularly stair climbing could act as triggers for PMR, it struck me immediately that when my PMR first appeared, it was at a time when I was attempting to intensify my exercise program with power walking and climbing the steps of the local football stadium.

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Profile picture for scpartain @scpartain

@pmrsuzie When my rheumatologist suggested that vigorous exercise and particularly stair climbing could act as triggers for PMR, it struck me immediately that when my PMR first appeared, it was at a time when I was attempting to intensify my exercise program with power walking and climbing the steps of the local football stadium.

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@scpartain and all... Yep! That's my finding as well. Not that I ever in the last couple decades did power walking or climbing the crazy football stadium steps... That's a great exercise for you perhaps, but it's been years since I did anything like that. I played a good tennis game in my 20s-30s, but Sarcoid hit at 40 and Osteroporsis at 35, so I stopped my fun goodies like tennis long ago. The therapy pool is a great way to get the body moving gently, in warm water, with good, easy resistance. I'm not doing that now even, as I can't get to the pool regularly and the effort is pretty extreme... just to get going and dressed is a bunch.

In PT in rehab, following PMR and the paralyzation I experienced, we noticed I did well on the recumbent stepper, and loved it. It made me feel great and I could slowly do it for a good while, 20 minutes plus... but, Boy Hidey! If I got too excited and overdid the stepper, which s my nature... either in the movements or the time using it, my muscles quit and refused to work. I couldn't walk well, my feet felt glued to the floor. Legs were concrete! back became painful. I could possibly shuffle my feet to move forward, perhaps not. It was astounding.

That says it all to me, right there. Excercise is not my muscle's friend at this point, not with PMR playing it's crummy games.

I am now in a other PMR flare... began a couple weeks ago and am on 16 mg Prednisone now, from 14mg. Not high enough for relief. But, don't want to go higher! It took a year to taper down from 20 to 14mg and I hate to get back up again.

I'm really having a lot of hip and thigh pain this time, shoulders are like concrete and upper arms are painful, as are my arthritic hands, fingers, lower arms, shins. I wake at night in bad hip pain, one hip at a time, although it is bi-lateral for both hips and shoulders. Fatigue is horrid. I sound like I'm I'm complaining, guess I am. I don't like this illness. It takes away so much from the bits of quality of my life at this stage, I am somewhat angry with it for being so persistent and mean. It is just plain mean!

Now, it's evening. I'm hurting more, took a Tramadol and waiting to be able to get to sleep. So, this is the way I sound when this happens. During the day, I seem to be doing fairly well considering, accepting the relapse ok and dealing with it, but folks... I am not a happy camper this week. Ready for something to happen to make it stop.

Visit with my rheumatologist next Monday, blood-work tomorrow and should be able to figure something out. Perhaps a different medication? A biologic? Or, increase Prednisone again. It does help and give me a bit of energy... tiny bit but that's improvement!

Acceptance! Deal with today as it comes. Focus on the things we know will improve whatever is happening... rest.

Blessings to each of you special folks. You are, you know. We are a crazy kind of club, we PMR survivors. Sturdy, strong, determined, caring and wishing you all the best of the day!
Blessings, Elizabeth

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Profile picture for ess77 - Elizabeth @ess77

@scpartain and all... Yep! That's my finding as well. Not that I ever in the last couple decades did power walking or climbing the crazy football stadium steps... That's a great exercise for you perhaps, but it's been years since I did anything like that. I played a good tennis game in my 20s-30s, but Sarcoid hit at 40 and Osteroporsis at 35, so I stopped my fun goodies like tennis long ago. The therapy pool is a great way to get the body moving gently, in warm water, with good, easy resistance. I'm not doing that now even, as I can't get to the pool regularly and the effort is pretty extreme... just to get going and dressed is a bunch.

In PT in rehab, following PMR and the paralyzation I experienced, we noticed I did well on the recumbent stepper, and loved it. It made me feel great and I could slowly do it for a good while, 20 minutes plus... but, Boy Hidey! If I got too excited and overdid the stepper, which s my nature... either in the movements or the time using it, my muscles quit and refused to work. I couldn't walk well, my feet felt glued to the floor. Legs were concrete! back became painful. I could possibly shuffle my feet to move forward, perhaps not. It was astounding.

That says it all to me, right there. Excercise is not my muscle's friend at this point, not with PMR playing it's crummy games.

I am now in a other PMR flare... began a couple weeks ago and am on 16 mg Prednisone now, from 14mg. Not high enough for relief. But, don't want to go higher! It took a year to taper down from 20 to 14mg and I hate to get back up again.

I'm really having a lot of hip and thigh pain this time, shoulders are like concrete and upper arms are painful, as are my arthritic hands, fingers, lower arms, shins. I wake at night in bad hip pain, one hip at a time, although it is bi-lateral for both hips and shoulders. Fatigue is horrid. I sound like I'm I'm complaining, guess I am. I don't like this illness. It takes away so much from the bits of quality of my life at this stage, I am somewhat angry with it for being so persistent and mean. It is just plain mean!

Now, it's evening. I'm hurting more, took a Tramadol and waiting to be able to get to sleep. So, this is the way I sound when this happens. During the day, I seem to be doing fairly well considering, accepting the relapse ok and dealing with it, but folks... I am not a happy camper this week. Ready for something to happen to make it stop.

Visit with my rheumatologist next Monday, blood-work tomorrow and should be able to figure something out. Perhaps a different medication? A biologic? Or, increase Prednisone again. It does help and give me a bit of energy... tiny bit but that's improvement!

Acceptance! Deal with today as it comes. Focus on the things we know will improve whatever is happening... rest.

Blessings to each of you special folks. You are, you know. We are a crazy kind of club, we PMR survivors. Sturdy, strong, determined, caring and wishing you all the best of the day!
Blessings, Elizabeth

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@ess77 Elizabeth…..I feel your pain…….etc. Pls know You are not alone on this emotional roller coaster.
My experience is, pool exercises are least impactful, assuming you can climb the stairs (was my initial problem). Tylenol for Arthritis was a huge help and ok to take with Prednisone.
Lastly, I love my biologic Kevzara…..note: it can take up to 3 months to kick in. I was able to get off prednisone.
Good luck, we are all with you

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Profile picture for ess77 - Elizabeth @ess77

Well, folks. I wish!
I first met PMR following my 2nd Covid infection 2 years ago. What a rough time. I was already worn down, experienced 2 weeks home in bed, on bi-pap with O2, taking Covid meds and supplements, refusing to go to hospital and caring for myself, alone. Rough. But, I did improve slowly.

I awoke one morning after kicking Covid, in excruciating pain in both my hips, limited mobility, little use of my hips or legs. I could not turn over in bed! Then, my shoulders did much the same, both shoulders ached and felt like concrete was holding me down.

I was in trouble. Called my primary doctor. He said it sounded like PMR, began Prednisone immediately with other instructions, but again alone to care for myself.

After several weeks with gradual improvement, able to get in and out of bed, etc., the Prednisone reduced the inflammation and pain and I improved. Then, GCA hit my temples and eyes and head. Methotrexate helped.

I did go into remission for months. Never returned to the mobility I had prior, but could begin pool therapy and function fairly well, for me. I was never pain free. Never could lift my legs and feet as before PMR. My muscles and nerves weren't communicating well. But, tapered down to 10mg Prednisone, off Methatrexate, for several months.

Then, May 2025, had high glucose due to Oxympic reaction... it was controlling well the steroid induced diabetes I developed. Then, my body rejected it and I was a very ill lady, every side effect possible. Downhill... coma level glucose and ER, admission to hospital, insulin 5x daily with horrid Rollercoaster, hospital rehab for a week.

There, I became paralyzed from my hips down, for 4 days. 20 mg Prednisone reduced paralysis... PMR flare? Rare... but?

Learned how to make feet move and walk. Limited exercise. Too much caused relapse of paralysis. 1 month in horrid nursing home! Home. Limited movement. In bed most ofvthe day. Working on laptop, etc.

Tapered Prednisone to 14mg... with difficulty. Increased pain, increased muscle spams and issues, but landed on 14 mg for a bit.

Then, May 2026, PMR flare hit hard. Up to 16mg Prednisone, but need more. The hip pain wakes me at night, is severe and I'm taking Tramadol for a short time to make it through the pain. Shoulders are useless. Hips and back spasm and the pain is constant. Mobility is limited.

So, I get the impression PMR is with us to some degree whenever it decides to respond to the stressor or whatever triggers it to wake up. I see it as though it's dosing for a bit, waiting to create havoc in our bodies.

It's a mean, unforgiving disease. Hiding and keeping secrets from the medical folks. Nasty thing it is!

My thoughts. Don't know how to keep it at bay... it is humbling. Devastating when it hits hard. And persistent as heck.

I pray each of you find some peace and relief when a flare hits. I am challenged by this thing, but a determined Southern woman with a steel spine and strong will. So, I will not bow to this thing!
Blessings to all... Elizabeth

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@ess77 wow!!! Hugs and hope you keep improving and can lessen the pain and hopefully increase quality of life. That is one heck of a rollercoaster. Yeah, many have such a tougher road than me. Best of luck. Sabina

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@tweetypie13, @pmrnew, @scpartain, and all... My Goodness, folks. Thank you so much for your lovely responses. I don't recall ever having such wonderful supportive messages when I was actually experiencing issues with these things. Good reason, I suppose. I don't usually write about them as they are happening. Geez....

Usually, I report on diseases and treatments and try to help those walking the journey to see what I've experiences and hopefully gain a bit of insight to help as they step forward. This time, however, I let you in as it is happening. That makes you extra special!!!

Your words and thoughts brought me a bunch of joy this morning. Thank you so. I do live alone, have no family near other than my dear 57 year old son who is disabled with cervical dystonia and a plethora of other illnesses on top of that... It's a tough life for him. He became disabled at age 35, as his law practice was thriving and he was enjoying his so precious years... all gone. Suddenly, horribly yanked from him forever. So, we are working to make his life as tolerable as possible, with a pain pump, multiple meds and procedures to block or kill nerves to give a tiny bit of pain relief. So, there you go.

Having your support means so much.

Thank you. Isn't it lovely to be able to make someone, even a person you have never seen or heard, someone smile and have a moment of peace and pleasure???? That's part of the wonder of this Mayo Connect site! It is indeed a gift for which I am grateful.

Thank you, Mayo. Thank you, Colleen. Thank you to each of the mentors and the contributors... to each of you.
Blessings... Elizabeth

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Profile picture for ess77 - Elizabeth @ess77

@tweetypie13, @pmrnew, @scpartain, and all... My Goodness, folks. Thank you so much for your lovely responses. I don't recall ever having such wonderful supportive messages when I was actually experiencing issues with these things. Good reason, I suppose. I don't usually write about them as they are happening. Geez....

Usually, I report on diseases and treatments and try to help those walking the journey to see what I've experiences and hopefully gain a bit of insight to help as they step forward. This time, however, I let you in as it is happening. That makes you extra special!!!

Your words and thoughts brought me a bunch of joy this morning. Thank you so. I do live alone, have no family near other than my dear 57 year old son who is disabled with cervical dystonia and a plethora of other illnesses on top of that... It's a tough life for him. He became disabled at age 35, as his law practice was thriving and he was enjoying his so precious years... all gone. Suddenly, horribly yanked from him forever. So, we are working to make his life as tolerable as possible, with a pain pump, multiple meds and procedures to block or kill nerves to give a tiny bit of pain relief. So, there you go.

Having your support means so much.

Thank you. Isn't it lovely to be able to make someone, even a person you have never seen or heard, someone smile and have a moment of peace and pleasure???? That's part of the wonder of this Mayo Connect site! It is indeed a gift for which I am grateful.

Thank you, Mayo. Thank you, Colleen. Thank you to each of the mentors and the contributors... to each of you.
Blessings... Elizabeth

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@ess77 beautifully said…..❤️❤️❤️❤️

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Profile picture for tweetypie13 @tweetypie13

@ess77 Elizabeth…..I feel your pain…….etc. Pls know You are not alone on this emotional roller coaster.
My experience is, pool exercises are least impactful, assuming you can climb the stairs (was my initial problem). Tylenol for Arthritis was a huge help and ok to take with Prednisone.
Lastly, I love my biologic Kevzara…..note: it can take up to 3 months to kick in. I was able to get off prednisone.
Good luck, we are all with you

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@tweetypie13 and everyone here, thank you for sharing your experience with this terrible disease, it is so helpful to hear of othered experiences. Just to know I’m not crazy, the wild swings of symptoms I’ve experienced over the last year. Thanks for sharing also your experience with Kevzara, as I’m going to start on that next week when I see my rheumatologist.
I’ve been taking a low dose of methyl prednisone, 8 mg. Daily. And the dr. Added methotrexate 17.5mg once a week, but I’ve not noticed any improvement.
My problem is I have osteopenia, so the steroids caused me to have a bilateral fracture of my sacrum, which took some weeks to discover the cause of my terrible pain. I’ve never been able to have a high enough dose of steroids to eliminate totally the pain in my hips and shoulders.
Except in the beginning, they stopped the pain pretty quickly, until the fracture.
Does anyone else here have issues with osteopenia/osteoporosis?
How do you cope with this and the disease?
If the Kevzara doesn’t stop the pain (I’m using a walker, unable to carry my weight, the pain is so great unless I’m reclining in bed), i don’t know what to do next.
Many thanks to all of you for your shared experiences.

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