Hello, I'm Don. I was diagnosed with VEXAS in May, 2023 by Dr. Andrea Maderal at the Univ. of Miami Research Center in Miami (she's a Dermatologist). She quickly referred me to the National Institute of Health (NIH), in Bethesda. I visited the NIH for 3 days of testing in October (Hematology, Rheumatology, Bone Marrow Biopsy, the whole works). Coincidentally, Rheumatologist from NIH, Dr. Kelly Corbit, moved to UM in August. She, in coordination with Dr. Peter Grayson and Dr. Bhavisha Patel, have prescribed Prednisone, Tocilizumab, Colchicine, and recently added Celebrex (for joint inflamation). Via previous misdiagnoses, I've been on prednisone for 3 years, averaging 25-30mgs daily. Now with the prednisone I kinda self manage, with two goals, 1) knock back inflamation during 'flares', and 2) reduce dosage to 10mg; in that order as these goals conflict. Also, I've recently begun taking the Tocilizumab via infusion, at max dosage. This has been a Godsend, as previous to August flares were keeping me in bed with severe fever symptoms 3 to 10 days a month! Since August, I've only been in bed 4 or 5 days total.
I would love to hear from others their experiences. I've written more than most on this thread, but would love to share my other experiences/symptoms/previous misdiagnoses, etc. if anyone is interested.
Be well!