Patient Comments: Polymyalgia Rheumatica - Symptoms

The symptoms of polymyalgia rheumatica can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Comment from: oldsprinter, 55-64 Male (Patient) Published: April 14

My polymyalgia rheumatica (PMR) started in the spring of 2008 with a stiffening neck and then every 2 to 3 weeks it would seem to include another set of muscles. By November I could hardly get out of bed and could not get dressed as it hit my left hand. I had been taking aspirin, ibuprofen, and Tylenol but they do next to nothing. At that time the doctor prescribed prednisone, 50 mg, within about 5 hours I felt almost normal. I was able to reduce that within weeks to 20 mg and now about 3 mg. I find I must be careful about tapering and try to go in 1/4s at this time. It is now spring 2014 and PMR is still with me.

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Comment from: ziggie, 65-74 Female (Patient) Published: January 16

My polymyalgia rheumatica came on very suddenly. I went to bed very healthy; by 3 AM I had a very severe pain in my right side. I screamed with pain every time I moved or tried to move. The emergency room couldn't diagnose me, this was over Memorial Day so I had a weekend of unspeakable pain. It left my right side and went to my entire left side in one day including my head and both feet. I couldn't walk without two people helping me. I finally gave in and called an ambulance for myself and went back to the emergency room. There was an older doctor there who said there was only one more test to run. My sedimentation rate came back very high. He gave me a shot of cortisone and a prescription for steroids and sent me to a nursing home. After 5 days on steroids I felt wonderful. But when I was discharged without steroids, the pain returned, especially in my feet. I went to see my family doctor who started me on 20mg of steroids in the morning and 20 in the evening. I felt so good. We've been reducing the drugs and my sedimentation rate continues to be low. I'm down to 5mg a day and will be reduced again on 1/31/14. I am 71 years old and was in perfect health. Side effects of the steroids are awful, balloon face, weight gain, always hungry. I'm told it usually doesn't return. I hope it doesn't.

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Comment from: memo, 65-74 Female (Patient) Published: November 01

I was diagnosed in October 2011. It affected both hands at first. I was unable to close them and had extreme stiffness and pain especially in the morning. RA (rheumatoid arthritis) was negative and sedimentation rate was 70. After being treated with NSAIDS and Celebrex, which did not work, it spread to arms shoulders and neck and upper thighs. I tried a Medrol pack with instant relief, and was diagnosed with PMR (polymyalgia rheumatic). I have been on prednisone 2 years now. I started at 20 mg, finally weaned to 5 and it all came back with a vengeance this summer. Now I am on 12mg and barely holding. I did not notice the fatigue until this summer and now must submit to daily naps.

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Comment from: dkj71156, 45-54 Female Published: December 02

I was just diagnosed with polymyalgia rheumatica (PMR) on October 31, 2008. I started hurting at the end of August 2008. It started with me not being able to use my right foot to push the pedal that I use to type with. (I do medical transcription at home.) Then my knees started hurting, and it progressed to my low back, right hip and buttocks and down the back of my right leg. I could not lift my right leg behind me like to put on clothes, socks and shoes, get in and out of the car, etc. I then had to start using a cane. I felt as if I had the flu and that someone was sitting on me. I had no energy at all. I usually have a high tolerance for pain. Then I thought it was just in my head. Finally, I went to the doctor. My RA factor was normal but my sed rate was elevated. I took some OTC anti-inflammatories, but nothing helped. She then ordered a Parvovirus human B-19 test, sed rate, CRP and another RA. My parvovirus was positive; the RA was still negative; my sed rate had gone up (68); and my CRP was 50. She then sent me to a rheumatologist, which took a while to get into, and she diagnosed me with PMR. I have been on Prednisone now since November 2, 2008 at 10 mg per day. Most days it works, but today, I am hurting. Right now, both of my shoulders, my right wrist, right knee and both buttocks hurt. When I feel really good, I wonder if there is really anything going on, and then just like today, it brings me back to reality.

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Comment from: Myrna, 75 or over Female (Patient) Published: March 26

My polymyalgia rheumatica seemed to start with stiffness in the entire body, starting in the neck. I had extreme pain in the muscles all over my body. I was very tired, but I thought that was due to the need of my B12 injection. I was diagnosed with a B12 deficiency back in 1997. I have been using my reading glasses more than usual lately, I thought maybe some tissue was growing over my eye lens again, that happened before, after I had cataract surgery. I am 80 years old.

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Polymyalgia Rheumatica - Diagnosis Question: How was your polymyalgia rheumatica diagnosed?
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