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@kspowell -Your final sentence in this post really resonated with me. I have similar feelings about my rheumi. I have had PMR for about one year and first presented with an extremely elevated CRP of 165. I could understand the focus in reducing that number and the steroid treatment has been successful. My CRP has been normal since last fall and we are tapering off the steroid. So, the pain is controlled but I still have symptoms which seem to come in waves and dissipate in a day or so. The symptoms include extreme fatigue, loss of appetite and body temp regulation, tingling of skin (particularly the scalp), some pain in the pelvis area, and increased morning stiffness. I characterized this as a flare and fully expected my CRP to be elevated but it was not. So I asked the doctor if these PMR symptoms w/o CRP elevation were normal but she would not engage the question.
Replies to "@kspowell -Your final sentence in this post really resonated with me. I have similar feelings about..."
I am very interested to read this, particularly your reference to tingling of skin on the scalp. I was diagnosed with PMR in January and one of the odd things that seemed to be correlated with it was the desire to lightly scratch the top of my head. It does not feel itchy, but it does feel a bit weird. The tips of my fingers also feel weird in a similar way (my Dr said this was carpal tunnel syndrome). It is gratifying to see that I am not the only person with this (mild) symptom.
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Hi @aliceoleary, I had PMR untreated for a number of months, then started with a tender scalp, short stabbing pains in my face from the ear to the nose, lack of appetite, fatigue, which was anemia, an itchy toso, a dry cough, and a stiff sore neck with pains up the back of my head. I couldn't turn my head. I also got shingles even though I'd had the Shingrex vaccine a year prior and had difficulty seeing out of my right eye a couple of times. I had a temporal artery biopsy which was positive for Giant Cell Arteritis. It is treated with a higher dosage of Prednisone than PMR and can result in stroke and blindness if left untreated. I'm down to 4 mg of Prednisone now from 40 mg and also take a baby aspirin as people with GCA can be prone to aortic aneurysms. It's important to watch any symptoms that occur in the head or eyes for GCA.