Any difficulty in diagnosis of PMR?

I had symptoms for almost a year in the form of shoulder and upper back pain, muscle spasms and fatigue. My MD ran some blood work and started me on thyroid replacement and suggested physical therapy. Used ibuprofen for pain to the point I damaged my kidneys, but I was a nurse in a busy trauma ICU and had to work. I was wearing back and knee braces and TENS devices to try to cope. Then the sternal end of my clavicle swelled and game over, couldn't move my arm. More blood work revealed CRP of 22 with elevated Sed rate. Started me on 10mg prednisone and suggested a rheumatology consult, which took about 10 months to get. She thought it could be pmr, based more on the fact that my sister and brother had been diagnosed with it. Been a crazy trip. Was told it would last about a year. That was 2016.

I only had difficulty getting prednisone even though that was what I specifically requested for my pain. I saw the same ophthalmologist for many years for recurrent flares of uveitis associated with inflammatory arthritis. My ophthalmologist prescribed massive amounts of prednisone for uveitis and I always had plenty to spare.

I listed my ophthalmologist as my primary care doctor. I just didn't bother with a primary care doctor or a rheumatologist. Whenever I saw another doctor about pain, ibuprofen or a narcotic was prescribed. Prednisone worked a whole lot better than ibuprofen and narcotics.

One day I decided to throw away all my extra prednisone. I was feeling okay and I randomly decided that I wouldn't need prednisone anymore. I thought if I needed more prednisone, I could get more when uveitis flared up again. That was when my symptoms of PMR started to set in and a flare of uveitis didn't happen.

My wife made me see her primary care doctor. My wife was telling her doctor everything because she didn't like that I self medicated with prednisone. The doctor agreed with my wife and wouldn't prescribe any prednisone to me. She referred me to a rheumatologist instead.

My first rheumatologist wasn't much better. I was lectured about taking prednisone for "every little pain." Clearly, that rheumatologist didn't have a clue and the "little pain" comment still bothers me. Fortunately, I found my own primary care doctor who reluctantly prescribed prednisone until things were sorted out.

It wasn't until a second rheumatologist conferred with my first rheumatologist that things got sorted out. I don't know what all happened behind the scenes but the suggestion was that I return for a followup visit when I wasn't taking prednisone. I managed to hold the prednisone that was being supplied to me by my primary care doctor and returned for my rheumatology follow-up visit. That's when PMR was diagnosed in addition to inflammatory arthritis.

The next time I saw my primary care doctor and told him about the PMR diagnoses but he wasn't too surprised. He said when he first saw me, he suspected PMR.

I was a surgical ICU nurse until autoimmune problems forced me to work in a neurosurgery step-down unit. I managed my problems on my own since I was a nurse. It was no secret that I was taking prednisone. My nursing coworkers would often ask me how much prednisone I was taking. It was my hint that I needed to "chill out." If a nurse can't get a diagnosis ... who else can?

My problem was more about thinking I knew more than I did . I thought I could handle all of the prednisone I was taking. My first wake-up call was being in an ICU bed with a massive, extensive, multiple and bilateral PE. The ICU doctors were kind enough to say the PE was "unprovoked." However, I could hear the whispering about prednisone. That wasn't my first complication from long term prednisone use.

For me it wasn't the inability to be diagnosed. It was more about what to do about my problems and how to get me off prednisone.

It took 4 months for my PMR to be diagnosed because my inflammation markers were normal and I only hurt while in bed.

MD runaround !! System more important than patient.

I had my 4th Covid shot (3 Pfizer then 1 Moderna) and within a week developed pain and stiffness that just kept getting worse. I always have pain and stiffness with Covid shots but this was much worse and didn't get better. I lived with it for a month then called my doctor. He ordered a bunch of blood tests (inflammation markers, arthritis tests, etc). Based on physical symptoms (pain/stiffness in shoulders, hips, pelvis, knees -- classic PMR) and elevated inflammation markers, he diagnosed PMR. I was stunned - never heard of it! He started me on Prednisone (no I wasn't excited about prednisone) but I felt better in 48 hours! And now we are tapering down. I am currently at 4 mg.

I am going on 3 years. Saw my GP, a pain management doctor, a neurologist, and a neurosurgeon. All had different opinions. Started in my hip and thighs, progressed to shoulders arms, then to hands. Survived on massive doses of ibuprofen (no side effects from that yet.) It was gradually getting better when I saw a new GP who right away said probably PMR. But when my blood tests came back negative he said couldn't be. Now it has recurred in my hips, but not nearly as bad. Back on the ibuprofen. I do have hope it will finally go away. I am sure PMR is what I have and the most doctors don't understand the symptoms. If I am not better soon I will demand steroids. Thanks to this site I finally understand what I am dealing with.

Hi @gailg, I think the results of blood tests don't always cone back with high inflammation markers with PMR. I had full blown symptoms about six months, but my blood work was fairly normal (My CRP was slightly elevated but my PCP did not pursue it). The PMR symptoms stayed with me, and I eventually developed symptoms of Giant Cell Arteritis. Then my inflammation markers were off the chart.
The chapter on PMR and GCA in Cecil and Goldman's Textbook of Medicine, suggests physicians give patients with PMR symptoms a trial dose of prednisone if their bloodwork is normal. If the symptoms go away, it's PMR. If not, it's probably something else.
I hope that helps.

Thanks. Yes confirms my thoughts. Hope you are doing well.

Your answer makes so much sense. For myself I should have been more diligent. When I developed symptoms of PMR 3 years ago I was put on a very short term of Prednisone. In a matter of days I was showing signs of relief. When my symptoms returned a year ago I was told by the Rheumatologist that was Osteoarthritis & just keep active. It was an issue with my eyes a couple weeks ago that made me do some more investigating. I see my PCP on Monday & will back up my suspicions with the info I’ve gathered on this site.