Has anyone heard of Vexas ??
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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?
It’s been two years now since I started being treated for a skin problem. I have just been told I have “ Vexas”
I have been denied medication “Jakafi” by my insurance company. Please any advice. Thanks
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@mayo2290 Joe –
You must be feeling very frustrated to finally have an answer, and a potential treatment, only to have your insurance company stall things!
Unfortunately, VEXAS is a very newly diagnosed disease, and it often takes time for insurance companies to catch up with medicine on what are the recommended and covered treatments.
Here are two things you and your doctors can try:
Have the doctor appeal the denial and request an exception.
Search for prescription assistance – sometimes the manufacturer will help, other times the pharmacy can help you find assistance through GooRx or a similar discount program.
I hope with your doctor's help you can get the medication you need.
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?
@mayo2290 see my post. Mayo is a great place
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
I am up to 30 mg of prednisone, not ideal. Was on Hydroxy but that is discontinued. My dr here is looking at azicitdine but I am not sold on it.
@mayo2020. When i was prescribed Rituxan for my autoimmune disease, my health insurance said it was too expensive and they wouldn’t pay. Then the doctor called the drug company and they finally said that their company Foundation would cover the cost. Thank heavens!
Can you ask your doctor about pleading your case?
Sue, did you mean GoodRx?
Thanks Becky, I will be pleading, that’s all you can do .
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