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.
bhadfield,
I've experienced the same issues. I've posted previously about my experiences. Ankles and feet are also part of my symptoms. I've been on prednisone for over 2.5 years, averaging 25-30mg daily. I work with U Miami Research Hospital, not Mayo, and I am currently on Prednisone, max infusions of Actemra, and we've just added celebrex twice daily for my feet and ankles. I'm also working with the NIH Research team, who affirm UM's mandate for me: dual goals (conflicting) prioritized as 1) increase prednisone dosage during flares (roughly one every 6 to 8 weeks) to knock back inflammation and, 2) reduce prednisone to 10mg daily (so far I haven't been able to get here). During a flare I typically have to increase prednisone dosage to 40mg, then taper slowly (1-2mg per week). Hope this helps.
What is the name of your doctor at university of Miami? We are originally from Miami now with Emory in Atlanta and recently suggested we get second option at NIH. MDS and now inflammatory flares with Vexas.
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.
My husband with Vexas is having swelling of both upper arms and right foot. Ultrasound shows no DVT but soft tissue edema. Treating with prednisone 30mg but no improvement. Anyone else with simular symptoms?
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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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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.
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Like -
Helpful -
Hug
1 ReactionWhat is the name of your doctor at university of Miami? We are originally from Miami now with Emory in Atlanta and recently suggested we get second option at NIH. MDS and now inflammatory flares with Vexas.
My husband with Vexas is having swelling of both upper arms and right foot. Ultrasound shows no DVT but soft tissue edema. Treating with prednisone 30mg but no improvement. Anyone else with simular symptoms?