Most AAV patients have fatigue severe enough to be a disorder

Many people with ANCA-associated vasculitis (AAV) have profound fatigue that’s severe enough to fulfill the diagnostic criteria for chronic fatigue syndrome, even when the disease isn’t active, a study shows. “We emphasize that physicians should be aware of this when assessing treatment and management strategies for improving quality…

Tavneos (avacopan) was generally safe and well tolerated in adults with severe ANCA-associated vasculitis treated under a global early access program (EAP) before the therapy’s approval, a study showed. EAPs make investigational therapies available outside clinical trials to people with serious or life-threatening conditions who have few or no…

Concerns about the future, their disease’s social and emotional impact, and bodywide symptoms were prominent among those reported by ANCA-associated vasculitis (AAV) patients with low disease activity in a survey study from Mexico. People were responding to the AAV patient-reported outcomes (AAV-PRO) questionnaire, and its specific domains were found to associate…

A gene variant linked to increased production of proteinase-3 (PR3) — one of the targets of disease-causing antibodies in ANCA-associated vasculitis (AAV) — is more common among patients with anti-PR3 antibodies than those with antibodies against the myeloperoxidase (MPO) protein, a study showed. The higher blood PR3 levels with this…

Higher blood levels of soluble interleukin 7 receptor subunit alpha (sIL-7R alpha) — a portion of a receptor protein involved in inflammation — significantly associate with lower disease activity in people with ANCA-associated vasculitis (AAV), a small study found. These preliminary findings suggest that the soluble receptor protein “can…

Immune T-cells positive for the GPR56 receptor protein — a marker for cell-killing immune cells — may contribute to local tissue damage in ANCA-associated vasculitis (AAV) patients whose disease is associated with antibodies against the proteinase 3 (PR3) protein, a study showed. Notably, these cells were more likely to…

Cardiovascular events like a heart attack are more likely in people with ANCA-associated vasculitis (AAV) who also have diabetes, a study reported. Other identified risk factors for AAV patients, a group known to be at cardiovascular disease risk, included older age and a prior history of cardiovascular problems. “Treatment…

The first week of February, I turned 35. It was a typical, uneventful adult birthday — especially because it fell on a Monday. I happened to be traveling back from a weekend of out-of-state work, so besides some good wishes from family and friends, there wasn’t a huge celebration. (At…

Tavneos (avacopan) effectively reverses severe kidney disease associated with ANCA-associated vasculitis (AAV) compared with standard steroid therapy, according to a subgroup analysis of the Phase 3 ADVOCATE clinical trial. Greater improvements in kidney function with Tavneos were sustained for the two months of follow-up after the treatment stopped.

Living with a rare disease, by its nature, is isolating. According to the National Organization for Rare Disorders, a rare disease is one that affects fewer than 200,000 Americans. There are currently over 7,000 such diseases. I’ve lived with ANCA vasculitis, a subset of autoimmune diseases that affects…