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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)

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@tsc

Hi @ripley I have temporal arteritis. I had PMR first and my symptoms started a year before I was diagnosed. I had some symptoms that came and went - scalp tenderness, a very itchy torso, gagging attacks, a dry cough that always started after dinner, two incidents of not being able to see out of my right eye. The worst pain that stayed with me the whole time was a neck so stiff and sore I couldn't turn my head and pain radiated down the left and right sides of my head from the middle (where the tops of my ears were) to the neck. I also had short stabbing pains from my ear to my nose on the right side of my face. It started with a few, then increased to about 25 a day. Have you had blood work lately for inflammation markers - sed rate and CRP? My sed rate was about 120. If you don't have inflammation and it isn't temporal arteritis, it could possibly be an infection, malignancy, connective tissue disorderr, hypothyroidism (Cecil and Goldman's Textbook of Medicine). Good luck - I hope you get a diagnosis. Teri

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Replies to "Hi @ripley I have temporal arteritis. I had PMR first and my symptoms started a year..."

What tests did the Dr base your diagnosis on? I don't have scalp tenderness or any of the symptoms you had, just headaches on the left side that come and go, and pain across the back of my neck. My blood work is all ok. Since 2019, my SED rate was never above 16 except for a week ago it was 25. My CRP was .04 on 1/25/22 but a day later when I was diagnosed with Covid it was .20. In 2019 I had both left and right arteries biopsied and it was negative. I know some people can have normal biopsy's and blood work and still have TA. I do have thyroid disease and take a supplement, which was recently reduced from 50 to 25mcg. Thanks for all your information.