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Hi @artist01, I am so sorry about your eyesight and your strokes. Were you suffering a long time before being hospitalized and diagnosed? Did you get a biopsy of your temporal artery to confirm the diagnosis? I had a couple of incidents where I couldn't see out of my right eye, but they were short - lived and went away. Although my mother-in-law had GCA, and I was familiar with her symptoms, mine were different, and I never thought I had it. Have you noticed that more people post about PMR than GCA? I had PMR first and the pain is something I will never forget. I was wondering when PMR and GCA were discovered and if there was any treatment before prednisone. Good to hear that Actemra is working for you . All the best, tsc
Replies to "Hi @artist01, I am so sorry about your eyesight and your strokes. Were you suffering a..."
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@tsc. Thankyou for your post. In answer to your questions, yes, I had symptoms of extreme fatigue and achey muscles for several months before the GCA diagnosis. I was in my kitchen at home when I suddenly lost most of the vision in my right eye. A right temporal artery biopsy was done shortly thereafter, confirming GCA, followed by an appointment with my Enterologist, who sent me directly to the hospital from his office. I was hospitalized for three days of 1000 units of Prednisone by I.V. daily over the three day period. As I posted in a prior message, I had a stroke on the second day (July) and a second stroke in September. The strokes were likely the result of the GCA vasculitis, known for causing strokes and heart attacks.
I had a heart attack in July of this year and was hospitalized for three weeks.
My rheumatologist has cut my Actemra injections back from weekly to every two weeks, but my weekly lab work has shown a drop in WBC, Neutrophils and Haemoglobin so I'm waiting to hear whether that's the result of the Actemra cutback. Always something!!
And yes, there sure isn't much posting about GCA, but quite a lot about PMR. I wish there were more Connect members to discuss GCA, a rare and serious disease.
Keep well, tsc. Warm regards, Laurie