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Has anyone heard of VEXAS syndrome?
Blood Cancers & Disorders | Last Active: May 4 11:09am | Replies (43)Comment receiving replies
Hello @mayo2290, Welcome to Connect. I couldn't find anyone who has mentioned the VEXAS syndrome in a post but hopefully members with experience will see your discussion and respond. You will notice that we added a little to your discussion title to better describe the discussion and help members with experience find it. I did find the following information about the VEXAS syndrome that might be helpful.
"In 2020, a team of NIH researchers reported the discovery of a rare and often-deadly inflammatory disorder, which they named VEXAS. Affected people have varying symptoms that can include anemia, recurrent fevers, painful rashes, blood clots, and shortness of breath."
--- VEXAS syndrome more common than realized: https://www.nih.gov/news-events/nih-research-matters/vexas-syndrome-more-common-realized.
Have you been diagnosed with VEXAS?
Replies to "Hello @mayo2290, Welcome to Connect. I couldn't find anyone who has mentioned the VEXAS syndrome in..."
Diagnosed with Vexas? Yes. Clinically, genetically, historically. At first we thought it was Multiple Myeloma, but then realized it is Vexas Syndrome according to genetics. oldkarl
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I have Vexas and being treated by Mayo doctors. Im currently on Actemra but it's not working so well yet. Last infusion was increased. I had a bad flair up of arthritis in my feet and ankles recently (couldn't walk) so I was given Prednisone short course. Then another. Symptoms improve but then as I taper they come back. Pain is difficult to manage when these flairs occur.