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Has anyone heard of VEXAS syndrome?

Blood Cancers & Disorders | Last Active: May 4 11:09am | Replies (43)
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@rjmctavish

I too have been diagnosed with VEXAS by the great people of Mayo. If you are lucky enough to be dealing with them you will get the best care. One of my options was stem cell, still looking to see if that can be done. Curious as to what drug treatments have been suggested?

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Replies to "I too have been diagnosed with VEXAS by the great people of Mayo. If you are..."
Joe | @mayo2290 | May 6, 2023

Hello, so far I am on five mg. of prednisone and 400 mg of Hydroxychloroquine . I was turned down from my insurance for Jakafi. People tell me that it works great, but very expensive.Don’t know what the next step is. Thanks for getting back to me. Joe

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