Comment from K Carson
AnonymousOpposeIndividual
Summary: A patient currently taking TAVNEOS (Avacopan) for ANCA vasculitis argues against withdrawing the drug's approval. She shares her positive experience with the medication, noting it has allowed her to taper off steroids and improve her quality of life compared to previous treatments.
I started Tavenos for ANCA vasculitis in April. I was tapered off prednisone within 5 weeks and my 30
Day Numbers were stable. Then at 60 days my kidney numbers improved and my liver numbers were stable. I am almost to my 90 day lab check and I feel really good. I am 70 yr old female with plenty of life to live. I feel that Tavenos gives me hope of returning to a normal life. When I was on steroids, I could not sleep. I was gaining weight in my face and my belly and I was concerned about my osteoarthritis and cataracts getting worse. With a Vacopan I have hope. being on steroids was terrible for my body. Rituximab keeps me immunocompromised so I wear a mask and can’t go to church or crowds. Taking avacaopan away and putting me back on steroids will be depressing. I will loose hope. I will watch my liver but I need the hope of living a good life which I did not get on prednisone