Comment from Fleming Franca
AnonymousSupportIndividual
Summary: A patient who successfully treated severe EGPA vasculitis with Tavneos argues against withdrawing the drug's approval. They share a personal testimonial regarding how the medication improved their kidney function and allowed them to reduce their dosage of Prednisone.
Please keep Tavneos on the market. I took this drug for 52 weeks for treatment of severe EGPA vasculitis which affected my: heart ( myocarditis) kidneys, and neuropathy of my hands and feet with other symptoms. By taking Tavneos I was able to decrease my high dose of Prednisone which was lowered at 12 weeks to a very low dose thereafter. I had Ruxience IV every six months as well. TAVNEOS allowed me to decrease Prednisone usage and my kidney which were at 17 GFR and creatine 254 during the initial vasculitis flare up improved. My kidney function is now at GFR 57 and creatine 104 to this present day which was more then a year of stopping this drug. My recent abdominal scan done this week showed my bile ducts are normal and liver ALT is 22. The scan did show that my non alcoholic fatty liver got worst due to weight gain (i gained 35lb) from difficulty with blood sugar control caused by the prednisone usage which was stopped a year ago. Again even thou this drug is costly the outcome is living a better quality of life. The most heartbreaking thing for me was struggling to hearing my young child telling me she does not want to grow up without mommy there during the worst part of the illness. Thank you for developing this drug. I can hug her and tell her I am here and I will keep fighting to stay alive.