Doctors' confusion over diagnosis: Questions they should ask

I’m going to add that PMR is flippin BRUTAL. I would go to almost any length to make the doc prove it isn't RA - similar symptoms, but more treatment options, and you wouldn't be chained to high levels of Prednisone until your bones are like french lace.

I have involvement in virtually every joint- even large joints. But I’m very well managed 95% of the time.

Just sayin -

Same for Reactive Arthritis ... Pain was more confined to my lumbar spine but I also had bilateral hip and knee pain ---larger joints were most affected and not so much in my hands and feet and never shoulder pain. Usually a flare of uveitis happened simultaneously with flares of reactive arthritis but the inflammation inside my eye was unilateral and almost exclusively my left eye only. Both reactive arthritis and uveitis flares responded almost instantly to a high dose of Prednisone followed by a fast taper. I could taper from 100 mg to zero in a month or two for a sustained remission of both reactive arthritis and uveitis. Flares of both could happen literally overnight or sometimes within in a matter of a couple hours during the day.

The electric shocks caused by trigeminal neuralgia were only around and behind my left eye. That pain seemed to be worse when my inflammation levels were too high because prednisone worked reasonably well for it too. A neurosurgeon said some interesting things about me using Prednisone for trigeminal neuralgia. He said Prednisone was probably helping the swelling and inflammation at the source of the problem near my brain stem. I called the electric shocks to my face my high inflammation level alarm.

PMR was unilateral shoulder pain at first but quickly progressed to bilateral shoulder pain in a couple of days. The pain quickly spread all over and was generalized and bilateral. New onset shoulder pain and being unable to lift my arms was the most compelling reason why my rheumatologist diagnosed PMR. ESR and CRP were elevated and were still higher than normal on 30 mg of Prednisone. I was old enough to have PMR at 52 years of age.

Reactive arthritis with recurrent uveitis started at the age of 32. Reactive arthritis was more localized to specific areas and bilateral but never my shoulders.

Generalized stiffness and pain worse in the morning was a characteristic of both reactive arthritis and PMR. Both responded rapidly to Prednisone but after PMR was diagnosed, I couldn't taper off Prednisone for more than 12 years.

Hi @lmz
I developed PMR after injuring my ankle from exercising. At first, my ankle hurt. A couple of days later, I developed pain and stiffness in my entire body from the neck down. I felt like the Tin Man in the Wizard of Oz. No amount of exercise or stretching helped.
Pain was most pronounced in the morning and throughout the day. It eased up a bit at night, and I was hopeful that it was going away, but, the pain, unrelenting , was back every morning.
I sometimes felt faint in the morning when I got up. I had symptoms for 6-7 months before getting blood tests, but they my inflammatory markers were not elevated at that time.
Eventually, I lost weight, was extremely fatigued, had a dry cough, at nights, and gagging attacks. I remember being extremely sensitive to the sun. My torso was itchy, no rash, and my scalp, tender. I had a few episodes of not being able to see out of my right eye and short, fleetiung head pains, like little lightning strikes.
A dotor friend told me to push my doctor again for blood work. My inflammatory markers (CRP and Sed Rate) were off the charts.
I had GCA, confirmed by biopsy of the temporal artery.

PMR is very responsive to appropriate prednisone dosage. If symptoms are similar, but not responsive to prednisone, medical text books advise physicians to seel alternative diagnosis, possible malignancy, infection, connective tissue disorder, hypothyroiddism (Goldman-Cecil Textbook of Medicine).

And for me, I awoke one morning with one numb hand that resolved in an hour, the next morning with two numb hands, and the third morning all hell broke loose… shoulders, hips, ankles, feet…elevated inflammatory markers and Sero negative for RA factor. And my Rheumy basically flipped a coin for a working diagnosis -RA vs PMR. I got the Humira and in five days started getting relief. But had she given me 30mg of prednisone i would have also gotten relief.

She picked right and 6yrs later i showed sero positive so she was smart and lucky.

Brutal. Thanks for sharing your onset. It will help someone.

The first Doctor i saw about PMR pain said it was referred pain from my back which i knew was rubbish. The orthopedic specialist i saw about the extreme pain in my hip, said it was arthritis in the joint which i knew was rubbish. I knew this from long experience with my own body. I researched various muscle pain syndromes and realized i might have PMR so documented everything that was happening in a timeline table format using exactly the wording you have listed . I scheduled a visit with a GP i respected and asked what he thought. Was blood tested on the spot walked out with 20mg Prednisone, referral to Rheumatologist for 2 weeks time. GP followed me up on the phone the next week. I consider myself very lucky bbased on the horror stories you see on this forum.

What did the IL-6 test show ? Did it inform the choice of drugs to treat the condition?

Dadcue, interested in your thoughts with a true PMR flare. By true flare I mean you have no symptoms of PMR and you are not on medication to treat it. No other medical conditions. I wasnt convinced PMR could restart but I am convinced now that if you get it once your not cured with prednisone merely remission. Steroids being the drug that appears married to PMR I felt a prednisone 5 day pack similar to an asthma attack would be the drug of choice. You mention going from 100-0 hypothetically. My first two flares (if thats what they were) I started at 20mg equiv. prednisone and tapered back over 5 days. No PMR pain and no steroid withdrawal. My third started a week ago and while better with 5 day pack I dont feel like its gone. I will probably experiment with waiting to see what happens. Of course none of this have I seen a Dr. Just basing my diagnosis on the fact that steroids work. What would a flare response look like to you? Or any others opinion.?

Hi Teri, could not resist asking about the last statement. "medical text books advise physicians to seel alternative diagnosis, possible malignancy, infection, connective tissue disorder, hypothyroiddism (Goldman-Cecil Textbook of Medicine." trying to make sure I understand what your trying to say.

Hi @tuckerp, thanks for asking, as I left out a critical part. That is, if prednisone does not relieve the symptoms of what the physician thinks is PMR, then an alternative diagnosis should be sought, possible malignancy, etc.