Comment from Anonymous
AnonymousOpposeIndividual
Summary: A patient who suffered from severe ANCA Vasculitis and kidney failure argues against the withdrawal of the TAVNEOS (Avacopan) application. The commenter shares their personal experience of successful treatment with the drug, noting it allowed them to titrate off steroids and discontinue dialysis.
I am writing to oppose the withdrawal of the Tavenos(Avacopan) application. I was diagnosed with severe ANCA Vasculitis(GPA - CANCA, MPO+,paucci-immune GN( creatinine 10.6) in September 2021. I had significant kidney involvement( and was placed on dialysis. My eyes, lungs and joints were also affected. After spending a month in the the hospital, receiving large doses of steroids and Rituximab infusions I was offered a newly developed drug called Avacopan.
I began treatment and was able to titrate off of steroids relatively quickly. My kidney function improved to a point I was able to discontinue dialysis. My inflammation was controlled and my ANCA became negative. I remained on Tavenos for two years. Personally, I feel the drug was beneficial. I am afraid of what my bones would look like now had I not had a drug that was steroid sparing. My experience with the drug was a positive one and if needed again I would not hesitate to have it prescribed.