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.
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
My Onco/haema-tologist refuses to admit that Vexas is real. Only one.I have more diseases and disorders than I can track. Vexas is not even the only cancer. Any good ideas for tracking meds and doctors and symptoms, especially when my ten MDs all disagree on what to do? I take about 60 meds per day. That is too much
My Onco/haema-tologist refuses to admit that Vexas is real. Only one.I have more diseases and disorders than I can track. Vexas is not even the only cancer. Any good ideas for tracking meds and doctors and symptoms, especially when my ten MDs all disagree on what to do? I take about 60 meds per day. That is too much
Hi @oldkarl, living with multiple chronic and complex conditions is a full time job. Like I need to tell you that, right. But what a dilemna when your doctors don't agree on what to do.
I moved your question about tracking meds, doctors and symptoms to this existing discussion about VEXAS, where you're more likely to get helpful tips from others like @dpmcgeejr@mayo2290@rjmctavish@bhadfield@anne8185.
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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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2 ReactionsMy Onco/haema-tologist refuses to admit that Vexas is real. Only one.I have more diseases and disorders than I can track. Vexas is not even the only cancer. Any good ideas for tracking meds and doctors and symptoms, especially when my ten MDs all disagree on what to do? I take about 60 meds per day. That is too much
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Like -
Helpful -
Hug
1 ReactionHi @oldkarl, living with multiple chronic and complex conditions is a full time job. Like I need to tell you that, right. But what a dilemna when your doctors don't agree on what to do.
I moved your question about tracking meds, doctors and symptoms to this existing discussion about VEXAS, where you're more likely to get helpful tips from others like @dpmcgeejr @mayo2290 @rjmctavish @bhadfield @anne8185.
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1 ReactionMayo is a leader in research and treatment of Vexas. Why is there not a classification or section for Vexas?