Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

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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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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I hope I am handling this post correctly. I was diagnosed with PMR in March 2019. I have since been told that I also have GCA. Temple biopsy was inconclusive, but the pain in my temple along with legs, hips, shoulders and neck has my rheumatologist believing that I have both. I was started on Prednisone 20 mg. That had no effect on the pain. I was then put on 60 then 80 mg. Prednisone. That worked. Doctor had me start reducing the dosage on my return from a trip overseas. From 80, 60, 40, 20, 10, and then 9. My ESR, which dropped from over 100 to a normal 07 started to go up again, as well as an increased pain level. My Rheumatologist had me increase from 10 to 20 mg. Test are now back to a normal range with less pain. Just started the dosage réduction again at 15 mg Prednisone. So far, so good. In addition to all this, over the last several months I have experienced extremely weak legs. Some days worse then others. My doctor says I am experiencing steroid myopathy. Only way to get over the tired legs is to get off the Prednisone. That’s where I am with this illness right now. BTW... while on 80 mg. Prednisone last May, I came down with double pneumonia and sepsis. It’s been a long recovery, but I am way better then back in May.

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Go more slowly with the taper this time Greg, or you will end up back at 20 again and each time that happens it's harder to taper. I suggest you attempt to taper by 1mg to 10mgs, and then 0.5mgs from there, staying long enough at each new dose to adjust. Never taper in pain and remember, slow and steady. All the best.

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Hello @gregp1, I would like to add my welcome to Connect along with @jules11. In addition to the great suggestion by @jules11 to try tapering more slowly, I would also talk with your rheumatologist to get a script for 1 mg and 2.5 mg prednisone tablets to help you taper by smaller amounts when the pain comes back or go back up to a lower dosage than the previous dose when the pain comes back.

Slow and steady does really help with tapering.

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I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs... not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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I am 56 and was diagnosed with PMR in Dec 2019, been on Prednisone since Aug of 2019, was up to 30 mg/day for awhile then tapered down to 25 then 20 when put on MXT. Doing 25mg of MXT/wk with folic acid daily, no real side affects except moon face and appetite, bu only gained like 5 lbs. this PMR is a beast. Some mornings can’t hardly move or get out of bed and others not as bad, but have constant pain in shoulders, groin, hips, butt, elbow and now left thumb it. Stared doing diet to alleviate inflammatory foods, sugars, carbs... not sure it is helping yet, only been on for 2 wks. Want to taper off prednisone but found very slow process. Seem only 1 mg at time.. for week or 2. Any advise would be great. Have lost considerable strength and mobility. I stretch, do yoga and exercise best i can. My rheumatologist said it will go away 1-3 yrs, but my PMR support group says never goes away, only goes into remission. Some have had it off and on for 15 yrs!! Is this true?? Major life change. Family and friends have no idea of the pain i deal with.

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Hi my name is Roland yes PMR is a beast & where you are experiencing pain & discomfort is normal. Now I have had it for 4 years now & am stuck on pred. 2.5 mg/day, as far as going away yes they say 1 to 3 years but here I am at 4 years. My pain is now down to both wrist & fingers not bad considering that hips & shoulders are now fine. Mayo says that up to 40% of the people that have PMR never goes away not to encouraging but life goes on . I have started taking 15 ML of liquid turmeric 1000 mg a day & it does help. Turmeric in liquid form as any liquid is quickly absorbed in ones system vs powder or pill. Qunol is the product name which you can get at Wal-Mart or Costco. Also plenty of exercise is recommended I do my gym work in the morning yes getting out of bed in the morning well I don't have to tell you it is not good. Now I am 79 yrs young still motorcycling & snow skiing. Keeping going is the secret. Best of luck with your PMR.

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