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Has anyone heard of VEXAS syndrome?

Blood Cancers & Disorders | Last Active: May 4 11:09am | Replies (43)
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@bhadfield

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.

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Replies to "I have Vexas and being treated by Mayo doctors. Im currently on Actemra but it's not..."
John, Volunteer Mentor | @johnbishop | Jul 16, 2023

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?

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dpmcgeejr | @dpmcgeejr | Mar 23 9:08am

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.

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