I’m joining the club and just started taking hep B medication (TAF) a few weeks ago! I had some reluctance starting after I was prescribed it back in December so held off. My hepatologist acknowledged he was going outside of guidelines but has seen enough HCC and urged me to take it. And even though I prescribe these medications every day to patients, I had to see that it was right for me.
My HBV DNA has always been very low, but started creeping up over the past few years. It has gone over 2K once and is now hovering right there, but my ALTs are solidly under 10 (I’m a petite Asian person which contributes to that). I’m HbeAg negative with precore mutation and genotype B. No family history of liver cancer but possibly cirrhosis.
My grandparents were in the medical field (dentist and midwife) in Taiwan and both found to have HBV later in life (they practiced in the days before universal precautions and gloving!) Interestingly, I always thought I got it from my mom who thought she had had HBV at some point, but in reviewing her results, she is actually HBsAg neg, HB core Ab neg and HBsAb positive! She’s never had HBV! I can only guess that I got it from my grandparents at some point early in life.
Anyway, I just want to share that it was the mounting information I was hearing about HBV virus’ effects on the immune system that finally convinced I need to already be on medication. I’ve seen the data formtalks now about how the virus integrates in the hosts DNA (and that’s partially we think you can get HCC even without a cirrhotic liver in HBV), and as we age age, the virus actually causes HBV specific Tcell depletion and immune exhaustion in the body. The current guidelines do not take this into consideration, but that was enough evidence for me.
I felt a sense of relief as I start taking my pills., I was concerned before that it might interfere with my immune response to the virus but from what we know, I believe it’s actually the opposite. Its great to know that we have these antivirals that can effectively the viral burden, which is the best we can do for now, as we wait for better therapeutics with the hope of functional cure!
There are a lot of grey areas in the treatment guidelines, and a lot of discussion now that we should be taking into consideration the patient’s values and preferences as we decide whether medicaiton is right for them. So don’t be afraid to voice what you feel is important to you.
I’m very glad to have this community of people to do this journey with. Thanks @ThomasTu for launching this and @Joan_Block for starting the HBlist way back when with HBF!
Su
P.S.
World Hepatitis Day is coming up on July 28. We, as people living with hepatitis, need to be at the forefront of raising awareness! Hepatitis is so neglected as a disease with very little funding and global attention. We need to change this. Go to worldhepatitisday.org and download resources you can use (posters, social media graphics, zoom backgrounds and FB profile things!). #HepCantWait