← Return to Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

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@ripley

Has anyone been diagnosed with Temporal Arteritis when all tests were negative? I started having headaches at my left temple in 2019. My blood work, ultrasound and biopsy were normal at that time. I had another temporal artery ultrasound this year which was also normal. SED rate and CPR are always in the normal range. The headaches have continued since 2019, coming and going for weeks or months at a time. Now the left sided headaches are daily 24/7 and often extremely painful. I also have bad pain at the base of my head, back of neck and left shoulder blade area. My arms and legs are achy and I'm tired most of the time. All my doctors (primary, rheumatologist and neurologist) tell me it's not Arteritis because my tests were negative and inflammation markers are normal. I don't have any jaw pain and my temples are not sensitive to the touch. Recent eye exam was normal. But my symptoms match those of TA. I don't want that diagnosis but don't have an answer to my symptoms which are making life very difficult. Thanks.

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Replies to "Has anyone been diagnosed with Temporal Arteritis when all tests were negative? I started having headaches..."

Hi @ripley, did your doctors ever prescribe a diagnostic trial of corticosteroids to see if your symptoms go away? I had most, but not all of the symptoms for GCA (which sound a lot like yours) and a positive temporal artery biopsy. Have they tested the arteries on both sides of your head?

Did you get ever get checked out for fibromyalgia? Before I was diagnosed with PMR/GCA a friend who has fibromyalgia said my symptoms sounded like hers. I don't think fibromyalgia has high inflammation markers. I hope you can get a diagnosis and some relief to your pain. All the best, Teri