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.
My 77 yr. Old husband has been diagnosed with unclassified MDS for 5 yrs. In October his bone marrow biopsy showed he has VEXAS. A genetic mutation identified in 2020 by NIH. It is an autoimmune disorder that causes multiple symptoms including MDS. He is with Emory Winship in Atlanta. Would like to connect with any others that have this newly named disease.
I have Vexas. I was diagnosed within the last year or so. Was on methotrexate and it didn't work...now on Actemra and it doesn't seem to be working either.
Connect
Connect
Like
Helpful
Hug
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
-
Like -
Helpful -
Hug
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
-
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.
-
Like -
Helpful -
Hug
1 ReactionMayo is a leader in research and treatment of Vexas. Why is there not a classification or section for Vexas?
I have Vexas. I was diagnosed within the last year or so. Was on methotrexate and it didn't work...now on Actemra and it doesn't seem to be working either.