Patient Comments: Polymyalgia Rheumatica - Diagnosis

How was your polymyalgia rheumatica diagnosed?

Comment from: Saralola', 45-54 Female (Patient) Published: March 08

I have asthma and am on Symbicort and ProAir inhalers plus Singulair on a regular basis. I got a virus 14 days ago that set off asthma and then bronchitis. I started myself on prednisone and an expectorant on the fourth day when it got worse. Three days later my chest was 'bubbling' with wheezing and I saw my primary physician. He added an antibiotic to be safe and told me to call back the next morning. The next day I could only blow 150 on my peak flow meter and called him. He put me in the hospital and I was there for five days under the care of a pulmonary specialist. I'm home but struggling to breathe and with extreme tiredness. I saw my regular pulmonary specialist yesterday as part of the follow-up. She noted I'm still very congested and that it's going to take a long recovery period. One doctor told me it takes three months to get over a lung problem like this, whether you're 25 or 75. This is disheartening but at least I know why it's so hard and so slow to improve. But it will.

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Comment from: jefrica, 55-64 Female (Patient) Published: March 10

My polymyalgia rheumatica (PMR) had a fast onset. My range of motion became severely limited, my husband had to help me get dressed for work each day. I continued to work although every move was painful. I went to my doctor who had no idea what was wrong with me. I researched my symptoms and diagnosed myself. I returned to my doctor with literature substantiating my proposed diagnosis. She was unwilling to give me a trial of prednisone and instead, prescribed tramadol for my pain. While this enabled me to sleep, my pharmacist cautioned me not to take it because I am allergic to codeine products. After four months of suffering, my husband took me to a local walk-in clinic where a wonderful internist ran every lab test he could think of to rule out a variety of other conditions. He also prescribed prednisone 10 mg daily and stated that this was the best way to determine the presence of PMR. One dose alleviated all of my symptoms and gave me my life back. I remained on prednisone for about 18 months, tapering to my symptoms. I have been symptom free for two years.

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Comment from: sarniajim, 75 or over Male (Patient) Published: February 16

I was first diagnosed with polymyalgia rheumatica probably about 10 years ago. My family doctor did not know what my problem was so I went to the emergency room and the doctor there took blood tests and found that my SED rate was high. I was put on prednisone and almost immediately I felt better. I finally was referred to a specialist who confirmed the diagnosis. He sent me for weekly blood tests, unfortunately he retired and I was back to my family doctor. I seem to be having regular recurrences of the disease. I started at 20 mg a day and tapered off. I was down to 5 mg a day when I had my last flare up. I am 87 and will probably go up and down on the medication for the rest of my life.

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Comment from: SavannahSandy, 65-74 Female (Patient) Published: April 16

I awoke with searing pain in my left groin. It was difficult to walk. In a day, the pain spread across a band around my hip girdle; buttocks, down both thighs and lower spine. My physician ordered an MRI and sent me to therapy, claiming that all the pain was probably referred from my back. All pain became more severe. I visited my neurosurgeon. He ordered two more MRIs, one of my shoulder and another of my upper spine. There were also a series of x-rays... all, in my uneducated opinion, not necessary. At the end of three months, I was able to see a rheumatologist. My own physician did not help make this appointment. I "present" exactly like any definition of polymyalgia rheumatica (PMR) except my blood tests are fine. I am on a very low dose of prednisone, and the doctor took me off both the Cymbalta and meloxicam I had been taking for atypical fibromyalgia, and put me on Lyrica. Pain remains but not severe. I will be 70 next month. I have been extremely fit my whole life as a swimmer, runner and fitness instructor.

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Comment from: Margaret, 55-64 Female (Patient) Published: April 11

I had suspected myalgic encephalomyelitis (ME) 25 years ago and things have never been the same since in terms of my fitness, weight problems and energy levels but despite that I have lived a relatively active life. I moved to Spain for the sunshine 6 years ago and it has been a hectic time, I have had some back problems for years following use of an exercise machine which I have tried to cope with by exercise and physical therapy. When it first happened the doctor just sent me for physiotherapy. I saw a doctor two years ago who basically just told me to get fitter. This winter though, I have deteriorated badly. Muscle and joint pain have reduced my mobility considerably, I couldn"t walk far and was in real pain after sitting for a while, and I couldn"t get out of a chair (or up from a toilet) unless I could push up with my arms, resulting in worsening shoulder pain. I also have some pain and tingling in one wrist and hand. I saw a new doctor and she immediately suspected polymyalgia rheumatica (PMR) but, to her surprise, the blood tests showed nothing. None the less she started me on prednisone, 50mg in the morning, reducing at ten day intervals. I thought it was just wishful thinking when I felt better the first day but it has continued and I am greatly improved. I am due to take the first reduction in two days. Very early days for me, great to feel some relief but I am concerned that there is no indication in my blood tests and also at the prospect of long term steroid use. Still, that sure beats the constant pain and immobility.

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Polymyalgia Rheumatica - Symptoms Question: The symptoms of polymyalgia rheumatica can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Polymyalgia Rheumatica - Treatment Question: What was the treatment for polymyalgia rheumatica in you or someone you know?

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