1. < Polymyalgia Rheumatica (PMR)

Length of PMR condition

Posted by puppytlc @puppytlc, Nov 15 3:00pm

I'm over 2 years into PMR treatment and I can't seem to find a definitive answer as to how long my condition is supposed to last. My rheumatologist says "possibly" 3 to 5 years and that depends on variables. Although I'm able to work a physically demanding full-time job with the aid an arsenal of medications, I'm becoming increasingly discouraged and just wish I could "see" an end in sight. Thanks, y'all!

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teddyz | @teddyz | 6 days ago
In reply to @dengland "Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I..." + (show)
@dengland

Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I was a very active 58 who overnight felt 80. I started pred at 20 mg and am currently at 3mg. I tried Kevsara but had terrible injection site reaction so chose to stop it down, but it did seem to be helping. I have a very high stress job and have been under general life stress as well. I manage to function but am in daily pain with the typical PMR trifecta neck,shoulders and hips. I feel like my muscle mass is wasting away but when I try to exercise I pay the price and am smacked down. Something as simple and going in the pool to lesson the effects has hurt terribly for days after. I have tried limitation diets, they don’t seem to help. I will say that for me stress seems to be a driver. I took my first real vacation this year and by the end of the week was feeling minimal pain, it was the best I have felt since this journey began. I tried to tapper upon my return and it all roared back. My rumy wants me to go on Methotrexate, I really don’t want to. It is tuff on the liver, I enjoy wine as my stress relief, so not good. It causes nausea and takes 3 mos to even see if it might work. I would welcome any insight if folks have tried. I keep hoping that PMR will leave me one day just as randomly as it arrived. Sure wish the doc who said this will be gone in a year was accurate, alas I am coming upon my 3rd anniversary. I actively research and it seems there are a LOT of us who keep PMR for a long while sadly.

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I'm a little frustrated right now too. I'm about ready to give up on the healthy diet. I can't see that it's made any difference and I just force myself to eat. I'm in the same cycle with exercise, pain, loss of muscle tone. I never thought about the stress impacting the PMR but now I'm wondering if that's what's behind this mini-flare. The good news is that I've been on Methotrexate for several months now, prednisone down to 2 mg, and I haven't had any nausea. The only side effect I've had is hair thinning. It really bothers me but I keep trying to put it in perspective. I'm still ready to do just about anything to get off the prednisone.

REPLY
michcan1 | @michcan1 | 6 days ago
In reply to @dengland "Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I..." + (show)
@dengland

Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I was a very active 58 who overnight felt 80. I started pred at 20 mg and am currently at 3mg. I tried Kevsara but had terrible injection site reaction so chose to stop it down, but it did seem to be helping. I have a very high stress job and have been under general life stress as well. I manage to function but am in daily pain with the typical PMR trifecta neck,shoulders and hips. I feel like my muscle mass is wasting away but when I try to exercise I pay the price and am smacked down. Something as simple and going in the pool to lesson the effects has hurt terribly for days after. I have tried limitation diets, they don’t seem to help. I will say that for me stress seems to be a driver. I took my first real vacation this year and by the end of the week was feeling minimal pain, it was the best I have felt since this journey began. I tried to tapper upon my return and it all roared back. My rumy wants me to go on Methotrexate, I really don’t want to. It is tuff on the liver, I enjoy wine as my stress relief, so not good. It causes nausea and takes 3 mos to even see if it might work. I would welcome any insight if folks have tried. I keep hoping that PMR will leave me one day just as randomly as it arrived. Sure wish the doc who said this will be gone in a year was accurate, alas I am coming upon my 3rd anniversary. I actively research and it seems there are a LOT of us who keep PMR for a long while sadly.

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Your story sounds like what mine will be... had symptoms for months but didn't know what was going on (thought maybe I wasn't exercising enough! but holy cow when I exercised I was in agony!) And now... my muscles are wasting away, I can't do half the stuff my body needs. And my job is very stressful... I am fully aware that my body is telling me I shouldn't be working this hard. But I can't change at least for a couple of years so... anyway, i appreciate you sharing. Also, why do rheumatologists say one year??? I was so disappointed when i realized I was never going to be able to taper in one year. But at least now I can manage my expectations.

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puppytlc | @puppytlc | 6 days ago

Thank you for all the replies to my post. I gained some good information and encouragement. Blessings!

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yogabonnie | @yogabonnie | 5 days ago

hi. I just passed 7 years a few days ago. I am 78 now. I do have osteoarthritis. hands feet knees shoulders but can function just fine. I Do adult tap and Heel drops. 50 a day and my bones have improved since initial prednisone caused damage..into osteoporosis.. now getting almost back to osteopenia. I take no other drugs. have good blood pressure, no diabetes, in range BMI, and good cholesterol (was high for 20 years but did not take statins. started doing ice baths )crazy I know) but cholesterol is normal now. I am on 2mg of prednisone. cannot get lower have tried and tried. lasted 2 months on 1.5 and finally gave up...too much pain and I believe that the exercise I did NOT do during that time. was more damaging than the 2 mg of prednisone while Doing exercise. (tap, 1x week, walk 3 miles a day, yoga 2x a week and light hand weights) My primary doc has been great. finally sent me to rheumy who was dismissive and said PMR only lasts 1 year and to get off prednisone that was when I dropped to 1.5 for 2 months in pain the whole time. ! good luck to us all!!!!

REPLY
2 replies
laurapmr | @laurapmr | 5 days ago
In reply to @cchantiles "@puppytlc Hi, I was diagnosed at 50 and am 54. My rheumatologist said I should only..." + (show)
@cchantiles

@puppytlc Hi, I was diagnosed at 50 and am 54. My rheumatologist said I should only have for 1 year too. The good news is that it's manageable and not life threatening. I'm at 5mg of prednisone for 2 years. Lower dose and PMR let's me know it's still around in my neck, shoulders and right outer thigh. Keep your chin up because as barracudacool said, stress and depression can make it worse. Virtual hug!

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I am tapering and down to 2 mg, thinking maybe I should go back up to 2.5 due to pain in neck and shoulders and occasionally thighs. However since I am actively mobile with tolerable pain treated with Tylenol during day and a long 8 hour dose to sleep, I am going to tough it out and see how I do as I go down to 1.5 in a few weeks. I really want to get off the steroids.

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mtr2601 | @mtr2601 | 5 days ago

I'm at 14 months, down to 2.5mg Pred, 200mg Plaquinil my CRP has been around 7 or 8 the last 3 months but I can still feel the PMR in neck, shoulders, hands, hips and lower back. The Plaquinil may be starting to cause damage to my eyes after only 9 months so might have to stop soon. I want to start fasting to give my poor body a rest from the constant inflammation but need to be off the drugs first. I'm going to beat this thing or die trying..stay positive

REPLY
jenbillig | @jenbillig | 4 days ago
In reply to @yogabonnie "hi. I just passed 7 years a few days ago. I am 78 now. I do..." + (show)
@yogabonnie

hi. I just passed 7 years a few days ago. I am 78 now. I do have osteoarthritis. hands feet knees shoulders but can function just fine. I Do adult tap and Heel drops. 50 a day and my bones have improved since initial prednisone caused damage..into osteoporosis.. now getting almost back to osteopenia. I take no other drugs. have good blood pressure, no diabetes, in range BMI, and good cholesterol (was high for 20 years but did not take statins. started doing ice baths )crazy I know) but cholesterol is normal now. I am on 2mg of prednisone. cannot get lower have tried and tried. lasted 2 months on 1.5 and finally gave up...too much pain and I believe that the exercise I did NOT do during that time. was more damaging than the 2 mg of prednisone while Doing exercise. (tap, 1x week, walk 3 miles a day, yoga 2x a week and light hand weights) My primary doc has been great. finally sent me to rheumy who was dismissive and said PMR only lasts 1 year and to get off prednisone that was when I dropped to 1.5 for 2 months in pain the whole time. ! good luck to us all!!!!

Jump to this post

I have had PMR for 7 years also. Up and down with prednisone. Tried ACTEMRA, horrible reaction. Back on 5mg prednisone. No pain, bones blood pressure sugar cholesterol all are fine. I no longer worry about staying on 5mg for the rest of my life. Am 86 and no pain.

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1 reply
yogabonnie | @yogabonnie | 4 days ago
In reply to @jenbillig "I have had PMR for 7 years also. Up and down with prednisone. Tried ACTEMRA, horrible..." + (show)
@jenbillig

I have had PMR for 7 years also. Up and down with prednisone. Tried ACTEMRA, horrible reaction. Back on 5mg prednisone. No pain, bones blood pressure sugar cholesterol all are fine. I no longer worry about staying on 5mg for the rest of my life. Am 86 and no pain.

Jump to this post

Sounds like a plan!!!! I like the idea of sticking with 2mg. the rest of my life too. Let us live to be 100!!

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1 reply
jenbillig | @jenbillig | 4 days ago
In reply to @yogabonnie "Sounds like a plan!!!! I like the idea of sticking with 2mg. the rest of my..." + (show)
@yogabonnie

Sounds like a plan!!!! I like the idea of sticking with 2mg. the rest of my life too. Let us live to be 100!!

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And have fun in the process

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alancant | @alancant | 4 days ago

Hi All - I'm down to 2.5 mg prednisone a day starting at 20 mg when diagnosed in June. I have been tempted at times to go back up to 5 mg during days with higher levels of pain but have resisted. I am 12 weeks into Methotrexate with no side effects but do wonder if it is working as I still have pain predominately in shoulders, elbows and hands. I'm going for my rheumatologist's appointment next week and he was prepping me for switching to an injectable which I don't want to do because as I read the potential side effects they look pretty ominous - so rather stick with methotrexate and hope it works! Any thoughts? and THANKS! What a wonderful group!

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