I realized after posting Tales of Hepatitis C that I have not told my story to hep blog readers. I’ve been a Hepatitis C advocate for more than 15 years, and have had hepatitis C for more than 25 years, so my story is old news to me. However, I do have new information, which may interest others--information that brings hope.
Contracted hepatitis C January 31, 1988; genotype 1a (don’t know my IL28B type); stage 2 liver disease
Treatment #1: 1997 with interferon monotherapy for 3 months. My viral load did not budge.
Treatment # 2: 2003 with peginterferon and ribavirin for 48 weeks. I was a responder-relapser.
In the meantime, I did advocacy work, wrote (and continue to write) for the HCV Advocate, and worked as a clinical trials nurse at Stanford Medical Center. In 2012, my book Free from Hepatitis C was published. The focus of the book is to arm people going through hepatitis C treatment with tools to help them navigate the rigors of treatment. I just finished my second book, due for September publication (Demos Health), Hepatitis C Treatment One Step at a Time: Daily Affirmations and Practical Tips for Successful Hepatitis C Treatment. The title explains the book, I hope.
I had planned on a third treatment with boceprevir or telaprevir plus peginterferon and ribavirin, but ran into some insurance issues, which made treatment unaffordable. However, last month I was accepted into a clinical trial at Stanford (my old place of employment) and I began a little over 2 weeks ago. The study is interferon-free using Gilead’s sofosbuvir (formerly GS-7997) and ledipasvir (formerly GS-5885), with or without ribavirin. I am in a 12-week arm with ribavirin. Two arms are for 24 weeks; two arms are without ribavirin.
My viral count before beginning the study drug was over 8 million. After one week, it dropped to 52 (as in the number of cards in a deck). My liver enzymes are normal for the only time in 25 years other than during my 2nd treatment. I am ecstatic and hopeful.
In my next post, I will give more details about the side effects.