Seeking Experiences from Long-Term Tenofovir (Viread) Users Who Stopped Treatment

Living With Hep B Treatment and Monitoring
1

Hello,

I’d like to hear from people who have been on treatment for many years — in my case, over 16 years — and who have stopped taking medication, particularly Tenofovir (Viread).

I want to hear in what cases it is possible to stop treatment, what your doctors advised, and what tests were done before discontinuing Tenofovir.

Thank you — I would really appreciate hearing about your experiences.

Best regards,

2

I haven’t been on Viread nearly as long as you, but I started it for the first time in 2014. At the time, I had HBeAg-positive immune active hepatitis. The medication helped immensely, and I was able to get my liver enzymes back to normal. In 2016, I went through e-antigen seroconversion, so I became HBeAg-negative. Then my doctors told me I could stop taking treatment in 2017 after I maintained seroconversion for over a year.

I was off of the medication for 5 years, and continued to be monitored during that time. Unfortunately, I had another flare up in 2022, and I decided to start Viread again. I think I will likely be on it until I can clear HBsAg, though I will probably switch to Vemlidy when it becomes available as a generic.

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3

Maybe you used for short time becouse you were older when you got infected. From what I learned if you got infected younger then it will be harder to get rid of it. I was only 5years old when got infected.

Thank you

4

My doctor thinks I’ve had it from birth. I started the treatment when I was 18.

5

Goedemiddag,

Ik gebruik sinds 8 jaar tenofovir alafenamide (TAF). Vorig jaar is mijn kwantitatieve HBsAg gemeten. Als deze waarde onder de 100 IU/mL ligt, zou het in sommige gevallen mogelijk zijn om “veilig” te stoppen met de medicatie. Hier zijn dan wel aanvullende voorwaarden aan verbonden, zoals geen cirrose hebben en minimaal 18 maanden volledige onderdrukking van het virus.

Bij mij was de waarde destijds helaas te hoog: 6.800 IU/mL, dus stoppen is momenteel geen optie.

Ik woon in Nederland, ik weet niet of deze richtlijnen ook in andere landen gelden.

6

Thanks for this, @Conny1968. Yes, these are guidelines and criteria that are followed in other countries too.

TT