People with ANCA-associated vasculitis (AAV) want more disease-related information from their healthcare providers for better self-management, a study based on patient interviews reported. Patients said they needed better communication about symptoms, relapses, living with AAV, and mental health. This led researchers to call on healthcare professionals to…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
Tavneos (avacopan), in combination with rituximab, leads to high remission rates without a need for standard glucocorticoids in people with ANCA-associated vasculitis (AAV), according to a small, real-life study in France. These findings add to results from previous clinical trials, further supporting Tavneos as an effective first-line approach…
There’s a customary phrase in the vasculitis community: “We’re sorry that you’re here, but we’re very glad you found us.” Coined by Marilyn Sampson, the founder of what is now the Vasculitis Foundation, it’s a succinct reminder of the dual nature of living with chronic illness. After…
A case of reinfection with COVID-19 has been reported in a patient who received immunosuppressive treatment for ANCA-associated vasculitis (AAV), which was linked to her first infection. Before her second infection, the 70-year-old African woman was given prednisolone and cyclophosphamide to combat AAV-associated kidney damage that had occurred after her…
Levels of a protein called KL-6 are elevated in ANCA-associated vasculitis (AAV) patients who have interstitial lung diseases, indicating that KL-6 blood levels could be useful for detecting lung disease in these people, a study suggests. The study, “KL-6 in ANCA-Associated Vasculitis Patients with and without…
In the vasculitis community, patients often encounter uncomfortable situations. Disease symptoms plague us. Getting used to shifted routines takes some adjustment. And maybe worst of all, new medications can cause debilitating side effects. Among the various unpleasantries, one name makes even the seasoned autoimmune patient shudder with revulsion: prednisone.
A third COVID-19 vaccine dose boosts immune responses against the SARS-CoV-2 virus in people with ANCA-associated vasculitis (AAV), researchers in Germany report. Antibodies against the virus and the ability to fight off more highly transmissible variants like delta dip over time after the second dose. But…
Classifying pulmonary manifestations in people with ANCA-associated vasculitis (AAV) with lung symptoms can help predict disease outcomes and determine which patients should receive more intensive treatment, a study from China suggests. For example, patients showing bleeding into the lungs (alveolar hemorrhage) in their computed tomography (CT) scan of the…
A few weeks ago, Kansas City, Missouri, got several inches of heavy snow. It happened on a Friday night, so we locals braced ourselves for a long weekend of staying in and getting cozy. (I’m in the middle of my hibernation month, so I wasn’t planning to go out…
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