Deciding when to start treatment

Congratulations Su on joining the “TAF-treated” club!! And thank you so much for sharing your journey towards making this big decision. It’s really helpful to hear why you decided “now” was the right time to start. I agree that the treatment guidelines developed by the different liver-focused medical societies (AASLD in the US; EASL in Europe, and; APASL in Asia) are not one-size fits all. And that the affected person’s values and preferences have to be considered as well when making a treatment decision. Making this decision can take a long time because there are a lot of gray zones. And once a person starts, it’s not recommended to stop due to possible flares that could be life-threatening. But my impression is that the science and medicine of hep b is trending towards treating everyone because of the viral integration into our own body’s DNA, not just the liver cell’s DNA.

Really interesting about your transmission story … that you didn’t get it from your mother! What about from your dad? But yes, your grandparents could have been involved. At this point of course it doesn’t matter how you go hep b. All that matters is that you’re taking proactive steps to manage it. And treatment is indeed a big step. Probably really sensitizes you to what your own patients go through when you recommend treatment for hep b (or any other condition they’re suffering with). They’re lucky to have you since you have walked in their shoes!

Keep us posted on your journey. And yes, it is good to know that we can take a little pill to keep the hep b virus at bay. But we still need a cure!! And for that we have the Hepatitis B Foundation, the World Hepatitis Alliance, and many other amazing nonprofit/NGO’s to thank for keeping hep b in the global spotlight and the push to find a complete cure!! Always, Joan

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Thanks Joan! It is crazy about my infection not being MTCT- my dad is HBcAb negative too and was actually not immune so got vaccinated at my hospital. My parents all thought they knew their status until they got screened in one of my screening programs (haha, talk about not knowing your own family history, how much have I talked about that to my patients…) and we realized it was totally not what we thought!
I even do a blog for HHS on Mothers day about “What my mom wish she didn’t give me” or something like that. Crazy huh, this all came out after that.
Thanks for all the work you’ve done and being so engaged on this forum- you continue to make a big difference in people’s lives!
Su

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Incredible story Su. Just goes to show even the most educated amongst us can be blindsided by the hep b virus!! I’ve always assumed I was infected at birth since most foreign-born Asians like myself are; however, since I was adopted, who actually knows? I could have been infected from the several needle sticks I encountered early in my nursing career, before patients were tested for hep b? But all of my liver specialists have assumed I was perinatally infected, so that’s the story I stick to. With that said, maybe both of us were infected as health care workers and just never knew it? Whatever the cause of our infection, at least we’re both dealing with proactively, and using our education and talents to help save others and support those who are living with hep b!! Always, Joan

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Hello
I’m hepatitis b positive
I need someone to read my result

HbcAb ——— REACTIVE
HbeAb————REACTIVE
HBsAb————NON REACTIVE
HBeAg————NON REACTIVE
HBsAg—————REACTIVE

HBV-DNA QUANTIFICATION——-4390 UI/ml

ABDOMINAL ULTRASOUND SCAN RESULT
LIVER - the liver span is 13.8cm , smooth edges and accentuated parenchymal echoes.No cysts or focal lesions seen . PV = 12mm and CBD=6.4mm…
Other intra abdominal structure are within normal limit
IMPRESSION: Essentially normal scan .

Liver function test
AIK.phosphate 100ul

Bilirubin 13.1ul
AST. 39ul
Alt. 25ul

SHOULD I START TREATMENT?

Hi Ben, thanks for joining hepbcommunity.org and posting your lab tests. Your results do confirm that you are living with chronic hep b and that fortunately your life is doing well as reflected in the relatively low liver enzymes (AST and ALT) as well as a “normal” liver ultrasound. I’m not clear how old you are, but younger people tend to have better lab values than older ones (that’s because the virus has had more time to damage the liver in us older folks - unless we take medication to slow down disease progression and potential damage).

Technically you would be consider in the “gray zone” of treatment because your liver enzymes are “normal”; however, your viral load (DNA) is in the thousands, so you could be considered for treatment. There are several factors that would be taken into consideration before starting treatment: your age, whether your family has a history of liver disease or liver cancer, where you were born (e.g. young men in Africa or born in Africa living with hep b have a higher risk of liver cancer), and if you have another medical conditions that could affect the liver (e.g. fatty liver disease).

Increasingly in the U.S., liver specialists are becoming much more proactive and treating younger people. There is scientific research behind this trend, but I’ll let another expert (Thomas Tu?) explain why earlier treatment could be beneficial, despite the current medical treatment guidelines.

Anyhow, this is a long answer to your short question. I’m sure others will weigh in. Thanks again and we look forward to hearing more from you! Always, Joan

I’m 24yrs
From Nigeria
No cancer in family history

Thank you so much
Appreciate will like to know more
Cause I’m really scared :flushed:
No better health here in Nigeria

I really don’t know how I get it

But I’m a heavy drinker before I do the test randomly
I just find out days ago

Hi Ben, the fact that you’re young - only 24 years - and have no family history of liver disease or liver cancer is good. With that said, if you were in the U.S., the doctors would probably monitor you before starting treatment. A “wait and see” approach because your viral load is pretty low, liver enzymes are low, and your ultrasound looks good. The key things that you can do right now is to avoid or limit alcohol, don’t smoke, eat healthfully and keep your stress level as low as possible to keep your liver as healthy as possible. But as far as treatment , I hope other experts can weigh in as well since I am not a physician. Thanks again for sharing your concerns. Your postings certainly help all of us! Always, Joan

Thank you so much :blush:
I quit smoking already and drinking
Eating healthy

If I may ask
Is eating garlic
Drinking ginger tea good ?

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My partner who we love together for long time now
Tested negative yesterday
And we have been having unprotected sex before my test …
she did get the first dose vaccine today

Hi Ben, yes garlic and ginger tea are good! There really is no specific diet for those with hep b, except to limit the amount of fatty, fried food because it makes the liver work much harder. Personally, I think the key is to eat a balanced, healthy diet that include fried foods in a limited amount. For example, I like a good hamburger and french fries! I just don’t eat them every day. Anyhow, really glad that you quit smoking and drinking. Now your lungs will be healthier as well as your liver! Always, Joan

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Hello Joan

I just got back from the Spealist today

He gave me 2 medication to take
So I can do another whole test December

  1. Livolin Forte
  2. silymarin Tablets

I want to ask if anyone have use this before ?
Thanks
Hope to hear from you soon

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Hi Ben, I’m not a big fan of taking liver herbal supplements like the ones you mentioned above. I don’t know anything about Livolin Forte except what I googled, none of which sounds impressive or medically supported. I know that Silymarin is Milk Thistle, which the U.S. National Institutes of Health has studied and determined that although it doesn’t appear to harm the liver, the benefits are minimal.

Honestly, I think the fact that you have stopped smoking and drinking will do to help your liver than these 2 herbal supplements, which are pretty pricey! My personal advice is to take that money and instead, buy more fresh vegetables and fruit to eat which will greatly improve your overall health. OR save the money for if and when you might start an antiviral medication. Thanks for writing and keep us posted on your thoughts. Always, Joan

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I am officially on TAF today, Welcome me to the Club :blush:. Thank God I found this online community. It was a relief for me. BTW, I am south east Asian from the Philippines 39 years old.
Brief history, I was diagnosed in 2010 when my employer had a free hep b vaccine. I thought at the time my employer will not let me continue working considering that I am just 2 months in the company. I was really depressed that time. Thank God they let me continue working after they saw my HBV DNA. In 2010 my HBV DNA was 33 iu/ml. The gastro at the time told to just take vitamins because I am an “inactive carrier” no need to take treatment because of low viral load. In 2016 my HBV DNA was 40 iu/ml. I did not seek the advice of gastro from 2011 to 2020. Pandemic struck and suddenly I fear for my health. June 2021, I went to a gastro and did some tests again. My gastro told me, “I will treat you regardless of your HBV tests”. My HBV DNA result 446 iu/ml. My ultrasound, liver is in good condition. She asked me about my family history. Maybe I got it from my mother. When I was diagnosed in 2010, the doctor then did not advise my family to take the screening test. I really don’t know where I got the virus. Honestly, that time I blame my mom (please forgive me mom). Yeah, I was horrible that time. I remember when I was 9 years old my dad had hepa A. I am thinking now if it’s really hepa A or B. At the time, the health care system in my country is not as advance as in first world or developing countries. I remember one time my brother was applying for a job in middle east as an engineer. On the first try of their physical exam he got a HBSAG reactive result. They gave him liver vitamins then he tested again maybe after 1 month and the result is negative. He was able to work in middle east for a long time. Now he is living in Canada. He migrated there with his wife. He went through all the physical exam here in the Philippines before going to Canada and he said all is clear. He told maybe compared to me, he has a strong immune system to fight the virus if we really got it from my mom. My mom passed away in 2012 because of COPD. My dad passed away last year 82 years at the height of pandemic. I was not able to see him because of lockdown :):frowning:
I have so many things in my mind now that I am starting taking treatment. I felt anxious to be honest, maybe overthinking. How did you overcome your anxiousness when you first take TAF or any treatment? Btw, the TAF(tenofovir alafenamide) is made in India under the license from Gliead Sciences. I am praying that the treatment will have a positive effect on my body.

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Wonder why your doctor put you on medication for possibly a lifetime, bc you are in the monitor stage.

Maybe get a second opinion on it? I don’t know your whole medical history or not a doctor, but maybe get a second opinion before starting the treatment, since this is your first day. Just my opinion

The gastro told me because of the increase in HBV DNA and family history.

This is helpful @Suwang88 as someone who is starting the treatment. I have low viral load too but with the information you shared about how the virus integrates in the hosts DNA and you can get HCC even without a cirrhotic liver in HBV. I am 39 now and time to look for my health. Thank you @Suwang88 and hope to hear more information from you.

Hi @jeandoe, thanks for sharing the story of your journey. This are good (and recommended) reasons to start therapy.

Regarding the anxiety, I think the more you find out that people do take these drugs for years/decades on end without having any side effect, the better you will feel over time. I have been on them for years and have had no troubles. I think @Suwang88 and @MarkDouglas have prescribed hundreds of people these medicines and the majority are absolutely fine for years on end.

Maybe others can share their strategies?

Cheers,
Thomas

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Thank you @ThomasTu for this. I really appreciate your response. I am on my second day today. I am feeling good, no side effects so far. After 1 month I will go back to my gastro for CBC monitoring. I am really grateful for this community. Thank you!

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