Questions on HBV, Socialising and Cirrhosis development

Just diagnosed or new to the community
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Hi all,

As someone who was recently diagnosed, I just came across a picture of a young woman in her 20s who had lost a lot of weight and had a swollen stomach. In her post, she was asking for help, and it was mentioned that she had developed cirrhosis due to Hepatitis B.

I have a few questions that I would really appreciate answers to:

  1. How could someone so young develop cirrhosis? I read that cirrhosis usually happens after many years of Hep B infection.

  2. Is it possible that she had Hep B but didn’t know until it got worse?

  3. How can someone prevent or reduce the risk of cirrhosis and liver cancer?

  4. How to could I become socialable again. I was once an active out going person but everything has changed since my diagnosis. Mainly because I’m trying to not drinking alcohol and also avoid the questions of why suddenly I’m not drinking again with buddies that I would usually hang out with.

  5. Lastly, how close are we to a functional cure? Will it became a reality?

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Hi @Acool,
Great questions. You are right, cirrhosis takes time to develop, so it is possible she had no knowledge of her infection or knew but wasn’t able to do much until this point. It is sad as this happens more, but we don’t hear those stories. 20 years is enough time for someone to develop cirrhosis.

Cirrhosis and liver cancer can be reduced by proper HBV management, either taking antivirals, vaccination for someone not infected, and staying in care so doctors can act sooner when sudden changes occur.

There is no time frame for a functional cure, we remain hopeful. It can be 2 years, 5 years, or 10 years, we don’t know.

On being able to socialize, you can do that without drinking. You can tell your friends you are trying to cut out alcohol because you have recently learned about its dangers. You can have a glass of water or a non-alcoholic beverage as they drink. Or better still, you can share your status with them, it could be an educative moment for them to get tested. We don’t want them ending up like the lady you talked about. It all depends on how you feel and the situation. You could be saving a life.
I hope this is helpful. I understand it is not easy and simple, so one must find what works for their situation. Best, Bansah1

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Thank you always @Bansah1

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Hi @Acool,

Great questions!

  1. Everything is a probability. While there is a low probability for hep B to cause cirrhosis so quickly, sometimes it does happen. There are other additional drivers to liver damage that could accelerate this: alcohol, some supplements/herbal remedies, coinfection with other liver infections, fatty liver, overdosing on medications, etc.
  2. Indeed it is possible that she had hep B and was unaware until cirrhosis, as we do know hep B can be asymptomatic until very late stages of liver disease.
  3. The most effective way of reducing risk of cirrhosis and liver cancer is to be monitored over time by a professional health practitioner who knows about how to manage hepatitis B, and get treatment when indicated.
  4. There are non-alcoholic options that you can consider and you could give a simple reason for wanting to look after you own health/lose weight. Or try meeting your friends in other venues where drinking is not the sole focus. Australia has a real drinking culture, but noone has ever given me a hard time for not drinking alcohol. Happy to hear from others how they have managed.
  5. There are two ways of looking at this important question. We don’t know how close we are because that’s the nature of research. An unforeseen reaction can tank a promising candidate. The other way to look at it is that we have never been so close to a functional cure, there are many candidates in the pipeline. My feeling is that it will become a reality at some point, but exactly when is still up for debate.

Hope this helps,
Thomas

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Thank you for answering my questions

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Hello Bansah, I read your respose to @Acool with great interest. I am new here, jsut discovred this community as @ThomasTu popped up in my search for more information on my own liver health issues. I have been a life long carrier of hep B, having “acquired” it at birth along with my 3 other sisters. Whilst 2 must have fought it off when they were babies, old sister and I became lifelong carriers. Both my sister and I are now in our mid-60s. So I have known andd been monitoring my condition since i was in my mid 20s.

About 16 years ago, i developed a flare and was subsequently put on entevir by my doctor. I am seeing the same infectious disease specialist in the royal melbourne hospital for 20 years now. The entecavir kept my viral load to non-detectable. Fast forward 16 years later, in January of this year, in my routine 6-monthly blood test, it was discovered that the virus has escaped suppression and an excess of 1.3M IU/ml was detected. My LFT then was normal. I was contacted by the hospital to go see them but i was away on a family holiday overseas but we had two telehealth consult during that time and i had continued to go for blood tests whilst overseas whilst consulting with doctors here. When i returned in early march, the blood tests indicated my viral loads had increased to 4.5M IU/ml, and my LFTs has broken off the top of the roof - in literal sense, with ALT of 131. I was taken off entecavir and put on tenofovir.

Just at the start of this week, i presented for a fibroscan and again the results were shocking, 12.5 kPa when it had been within normal ranges in the time before the virus broke out of suppression. That means severe inflammation, maybe even bordering on cirrhosis. My ALT had also gone up even more reading at 204. Only positive was that the viral road had fallen maybe 50% but was still in the region of 2.8M IU/ml. I have an appt to see my doctor tomorrow but I am frantic with worry, have been depressed for the last 3 months, with the thought that my condition might soon develop to liver cancer, and so quickly.

I have always lived a “healthy” life style, try to keep to a moderate weight, well, my BMI is 26.1 so yes, i am overweight, i keep off alchohol and eat a health diet. My doctor did what was a geno-typing (or something that sounds like that) in March and it was confirmed that my virus had mutated, which was why it could no longer be suppressed by entecavir. Tenofovir seems to be doing it work, but could it be too little, too late?

Many thanks for reading this very long message but I just needed share this with people who are similarly afflicted, who might know much more than i do about what i might expect going forward.

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Hi @Mei,
I am sorry to hear that you have developed a mutation which has lead to this situation. Entecavir I have read does have a low chance for mutation. I don’t know if your genotype meant you were prone to developing a mutation.

I can’t imagine how one will not be affected by such a drastic change. It’s great that you have kept in touch with you doctor. Let’s hope you do well on Tenofovir and your results gets back to where they were before.

I am aware of another lady that developed mutation while on antiviral treatment and it did set her back a bit. But she is doing well now. I hope your appointment goes well tomorrow. Reach out if there’s anyway we can be there for you and thank you for sharing your journey with us. We are all rooting for you. Bansah1

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Thanks very much for your response. Just happy to know that there is at least another person you know who had developed a resistance but is doing well now. One more reason for me to be positive, so thanks muchly.

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Thank you for sharing your tragic experience. And whilst you were on holidays!
I really feel your pain.
You must be beside yourself.
I pray it all goes well for you and the medical team will get your levels back to normal.
We are here for you. Keep us informed.
Blessings

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Dear @Mei,

Thanks for sharing your story and sorry to hear about your experiences. Indeed, such a worry during what should be a nice time off. It’s good that you got on another treatment and it is working. Hope to hear that your liver recovers over this time as the viral load comes down.

Please keep us up to date if you can!

Wishing you all the best,
Thomas

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