Comment from Melanie Nigro
AnonymousOpposeIndividual
Summary: A patient with Granulomatosis with polyangiitis (GPA) argues against the withdrawal of Avacopan (TAVNEOS) approval, stating that the medication saved their life and has been well-tolerated without side effects. They express concern that removing the drug from the FDA's approved list would jeopardize their health and remission.
I I was diagnosed with C-ANCA Vasculitus Gpa Granulomatosis with polyangiitis in March 2023. I was unable to walk from extreme pain and was nearing kidney failure. My current treatment regimen includes Rituximab 500 mg infusion and Avacopan. These drugs saved my life and I am currently in remission. I was given the warning about potential liver issues prior to receiving treatment. Having been on Avacopan 3 plus years, I have had no side effects and have experienced zero issues relating to my liver. Also diagnosed with NASH, my ALT and ALS blood levels are consistently in the normal range. As part of my treatment, I have monthly blood and urine labs performed to test many areas to ensure the disease is not flaring and that the medication continues to be safe for my body. I don’t know what will happen to my disease if Avacopan were to be taken off of the FDA list of approved medications. I am not sure I want to find out. What I do know is that I have been given a chance to live - work, travel, be a mom. I am more than willing to share more of my journey and or medical history to help the FDA better understand my condition and response to Avacopan.