Bill S posted an update 1 year, 11 months ago
Hello Forum, I am recently diagnosed with IPF as of January 2021. My PCP had me getting annual CT scans for the past four years all of which were negative until 2020. My pulmonologist has me on 100mg of Ofev since April 5. BI Open Doors has made contact with me through their educator, nurse and social worker and I appreciate their support. I have also made contact with Wei Institute and have had worthwhile conversations with them. I have been following this forum and realize there are several thoughts about medications; Ofev, herbal ( Soups A, B and CL balancer), currently researched Tyvaso, SAN903, MUC5B, Salvianolic AcidB (SAB), to name several. I am meeting an herbalist tomorrow. They all sound promising in mice but many await FDA approval and side effects are not mentioned.
Does anyone on the forum have experienced opinions? I’m 75 and feel great. No issues and all my pulmonary labs are normal/ near normal; VCF, blood oxygen, stamina, breathing, and no cough. I look forward to participating in this important and informative forum.