Has anyone heard of VEXAS syndrome?

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.

Hi, yes, I have Vexas, can’t get the meds for treatment, very expensive, Medicare insurance won’t cover them. Wish your dad the best. May I ask how old is he, I’m 73, was told I was to old.

@mayo2290 Insurance told you that you were too old?! Did you try calling them? Have you discussed this with your doctor to see if they might call? Insurance companies frequently have second thought when doctors call them and explain how serious the situation is.
Does your doctor have any other options for you?

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?

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.

Hello @bhadfield, Welcome to Connect. I'm sorry to hear you had a bad flare up of arthritis in your feet and ankles after your last infusion. If the prednisone helped with the symptoms, I wonder if you might be tapering off too fast. That is a common issue with polymyalgia rheumatica (PMR) when tapering off of prednisone too fast. Have you talked with your doctor about a slower tapering schedule?

Hello, The doctor said at my age I am not a candidate for stem cell transplant, Doctors are contacting the the drug manufacturer , waiting for a reply, don’t know yet if there are other options. Thank you