Hey, Lori, and good morning to you and anyone else listening.
I am 63. Early in 2021 I began displaying skin lesions and was initially diagnosed with Hives. This Dr. affirmed the diagnosis 2 more times over the next 12 months.
In Jan., 2022 I changed Dermatologists, and in my initial meeting with Dr. Jenna Bordelon she indicated immediately that I did not have Hives. She had an idea of what it might be but needed a biopsy, which was taken. By this time I began having fever like symptoms quite frequently. Dr. Bordelon's diagnosis included Dermal Lupus and Sweets Syndrome, and began me on all three recommended courses of medication for Sweets. sequentially.
My symptoms continued to worsen, and a pattern was developing; I began displaying 'Flares'. Each began similarly. About every 5 to 6 weeks I'd begin to display skin lesions (neck, back, chest, sometimes arms and legs). Within a day or 2 I'd get severe chills (shaking so violently that I'd need help from my wife to undress), followed by fever and night sweats. I'd be IN BED for 3 to 8 days each time; totally incapacitated. Often the symptoms included swollen ears, nose and eye lids. Early in 2023 I displayed very painful blood blisters on my hands. Toward the end of 2022 I began having inflammation in my joints; primarily ankles, knees, wrists and hands/fingers. Throughout I was experiencing various levels of fatigue, never feeling 100%; rather varying from 30-40% up to 85%. Also, Dr. Bordelon began to question the diagnosis, but indicated that it was likely beyond her scope of knowledge. She referred me to Dr. Andrea Maderal at the UMiami Research Hospital.
I met with Dr. Maderal in February, 2023. In our first meeting we reviewed all of the above and she indicated that since we hadn't been able to resolve the Sweets with the standard meds, it was likely being caused by an underlying 'smoldering metastisis'. Fortunately, just 2 weeks earlier she had read a study of VEXAS. She indicated that she doubted this was my problem but encouraged testing as the cost was only $100 and she wanted to rule it out. The genetic test was mailed to me, and in May of 2023 she called to confirm the VEXAS diagnosis. She also indicated that she'd started the process of ordering Tocilizumab (Actemra) with my insurance, indicating that it could take some time. As it turns out, she did have to ultimately request a peer to peer with the insurance company (BCBS). She also applied to the NIH Research program on my behalf. It should be noted that the NIH agrees with the Tocilizumab recommendation, as well as Prednisone and colchicine.
By now my pattern of sickness was incessant; I was very sick very often. Other symptoms arrived, included Metatarsalgia, more arthritic inflammation, more blood blisters, and then in November I developed a 2 foot Deep Vain Thrombosis, so add a blood thinner to my meds!
As mentioned above, I began self injecting Tocilizumab in August, 2023, which was changed to Infusions in January, 2024. We added Celebrex in February due to the severe pain of the Metatarsalgia; very difficult to walk.
I've lost about 20 lbs, which includes a estimated 8 lbs of muscle mass. NIH has strongly advised that I work to maintain and add muscle back, particularly in my legs, so I am working out hard to do so.
This is the first thread I've found on the internet that has a patient actually corresponding about VEXAS, so thanks to Joe for kicking this off! I've reached out to Dr. Beck and team at the VEXAS Foundation to encourage that they begin a Forum on their site as it would be a great centralized touch point for all patients (for instance, I'm not a VEXAS patient at Mayo, but patient One at UM). I hope this is all helpful to others. I'm very interested to hear from others about their symptoms, history, doctors, research, and treatment recommendations!

Blessings,

Don