Alliance Sets Treatment Plans by Consensus for Severe Pediatric AAV

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has established alternative consensus treatment plans for children and adolescents with severe ANCA-associated vasculitis (AAV). These plans, which compare two therapies for induction and maintenance of remission in pediatric…

What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking. Before my diagnosis, a few medical professionals…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

People with ANCA-associated vasculitis (AAV) who receive mycophenolate mofetil (MMF) as a remission induction therapy have similar remission rates as those given cyclophosphamide (CYC), an analysis of eight published studies has found.  The study, “The Role of Mycophenolate…

The disease-causing autoantibodies are sometimes present long before the onset of ANCA-associated vasculitis (AAV) symptoms, with distinct disease features depending on their antibody type, a recent study finds. Overall, the study presents “evidence of an initiation of the autoimmune process in…

Levels of the chitinase-3-like 1 (YKL-40) protein in the blood may serve as a helpful biomarker of disease activity in people with ANCA-associated vasculitis (AAV), findings from a new study suggest. Yet, additional studies are needed to validate the results and elucidate the role of YKL-40 in AAV, the…

“You are about to enter another dimension. A dimension not only of sight and sound, but of mind. A journey into a not-so-wondrous land of side effects. … Next stop: the ‘predni-zone.'” I have been living in the “predni-zone” for more than 14 years. In eosinophilic granulomatosis with polyangiitis…

Research into the potential interplay between different immune system components and coagulation in patients with ANCA-associated vasculitis (AAV), COVID-19 and systemic lupus erythematosus (SLE) has won a grant from the Academic Alliance Fund (AAF). The grant was awarded to Johan van der Vlag, PhD, and Cansu Yanginlar, MSc, at the…

People with ANCA-associated vasculitis (AAV) who receive rituximab treatment may have a higher risk of severe COVID-19 outcomes and should therefore be considered vaccination priorities, a recent case report suggests. The time since a patient’s last rituximab infusion and their current immunoglobulin level appear to be the most important…

Some days, I wake up and never want to leave the comfort of my bed. I don’t want to get up and struggle through the day. I don’t want to remember that I have eosinophilic granulomatosis with polyangiitis (EGPA), and even simple tasks take more energy than I have.