Comment from Ron Black
AnonymousOpposeIndividual
Summary: A patient currently using Tavneos for ANCA Vasculitis expresses strong opposition to withdrawing the drug's approval. They argue that the risk of a disease flare and subsequent kidney damage far outweighs the potential risk of liver side effects, and they note that their medical team supports continuing the treatment.
I have been using Tavneos for ANCA Vasculitis GPA Glomerulonephritis since March 2024 and have been in remission since mid-year 2024. My EGFR has slightly improved and remains stable in the mid- to low-20s mL/m. My personal risk of a Vasculitis flair remains relatively high. Obviously any loss of EGFR, in the case of a Vasculitis flair, would likely be devastating to my current health and well-being.
In comparison, while the risk of adverse liver effects from Tavneos is real, the risk of stopping Taveneous greatly exceeds the risk of continuing Tavneos for me.
I have discussed the issue with all of my providers - nephrology, rheumatology, primary, and my Vasculitis Nephrology specialist — and they all support and concur with the continuance of Tavneos.