← Return to Giant cell arteritis:I’m afraid and would appreciate any advice

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Profile picture for kimmgb @kimmgb

Hi I was diagnosed with PMR first and then developed GCA.
I have been on Actemera infusions once a moth and it has helped me tremendously both for pain and risk of losing my eye sight, which GCA can do. If you are in the states you can be on Actemera long term. Methotrexate did nothing for me when tried. I am only on 3 1/2 mg of prednisone now and have only been tapping 1/2 mg every 6-7 weeks.

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Replies to "Hi I was diagnosed with PMR first and then developed GCA. I have been on Actemera..."

@kimmgb I was diagnosed with GCA (after biopsies on both sides of temple region) approx 7 years ago. Due to adverse reaction to Prednisone (high dose for too long) I began monthly Actemra infusions, 5+ years, which relieved symptoms associated with GCA. My Rhemo decided to stop the infusions as I began having bowel issues. She put me on Methotrexate of which I took once weekly for approx 1 year the end result being liver enzymes escalating. I do not take Methotrexate as a result. I’m happy to say my hair is coming back. The end result being due to the rare GCA I did have several small strokes this past year (1 attack one week apart last Nov and then another in February.). GCA is an inflammation of the arteries in your temporal region and MRI showed shrinkage in my arteries resulting in minimizing healthy blood flow therefore strokes. I do not have heart related problems. I am in remission re: the GCA. Never had PMR.