INTRODUCTION THREAD: People affected by Hep B

Hi Adam and Sarah, I hear your pain about the decision to start treatment or not. Access is always an issue because of the cost. And since we don’t have universal care in the U.S., it’s reasonable to be concerned. So first all, Vemlidy (or TAF) is the newest drug on the block and is still under patent, so it’s the most expensive. Considering you’re both relatively young and don’t have to worry about osteoporosis, you could talk to your doctor about starting Viread (tenofovir disproxil fumarate or TDF) which is off-patent and is available as a generic - much, much cheaper! Also the other drug is Baraclude (entecavir) which is also off-patent and cheaper.

Please know that I’m not trying to dissuade you from Vemlidy. I would just encourage you to speak to your doctors about your concerns about insurance, cost and whether an alternative to Vemlidy is possible. And talk to your doctor about the option of switching to a generic option if you do lose your job/insurance. Just a few things to think about. Always, Joan

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Hi Adam and Sarah,

Welcome to the Community! I hope you find the answers and support you need here.

I want to support Joan’s suggestions. TAF, TDF (2 types of tenofovir), and Vemlidy (entecavir) are all great drugs that are quite effective, and the side effects of TDF that Joan has discussed in other threads are very unlikely in younger people just starting therapy.

Physicians need to make specific recommendations for their patients, even when there are multiple good options, so making sure they know all of the issues you are facing really helps them tailor therapy to you. Drug cost and stability of insurance are certainly important factors in the US, so please feel comfortable mentioning your worries to your doctor. S/He will understand. Fortunately, TDF and Vemlidy are both off-patent and are substantially cheaper.

I wish you the best.

John.

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Thank you! That’s reassuring!

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Thank you @ThomasTu , @Joan_Block @john.tavis for the suggestions. I’ll definitely take them with me when I go see my new gastroenterologist next month.

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Hi all, just to clarify, Vemlidy (TAF) is the newest hep b drug and still on-patent; hence, the most expensive. Viread (TDF or tenofovir disoproxil fumarate) and Baraclude (entecavir) are now available as generic drugs and the least expensive. Didn’t want there to be any confusion when you speak to your doctors. Always, Joan

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8 posts were merged into an existing topic: EXPLAINER: Lab results and their interpretation

Hello~ my name is Lisa, I’m from Indonesia but now live in Taiwan for study. Before going to Taiwan, I had to do a medical check-up and when the results came out I just found out that I had hep B (already 7 years ago). At first, I routinely went for check-ups every 6 months, until changed it once a year, because the result it’s okay. But the last 2 years I didn’t go, on November 2021 I wanted to check again and the result make me shocked.
HbsAg HBeAg both of them already over the limit. regrets for the last 2 years must be there.The doctor giving medicine with advise to an early bedtime, it really helps in decreasing but during the chinese new year, my uncle gave me a lemon flavored beer (my first time) then when I checked-up again the results were getting bad, because the other reason is my sleeping hours were back to normal, at 2-3AM ><

Honestly for hep B, I didn’t understand what the results of the check-up were, but at that time the doctor told me to check the amount of virus in my body. If it’s > 20000 viruses, you have to use drugs that are consumed forever until they are completely gone. That day made my day feel even darker, because I had to pay for it myself without any help from insurance. But I thought the results of viruses would not be that much, 2weeks later I went to see the results and again the results surprised me. It’s lready at 150000.
and yeaahh… consuming drug until we don’t know, just said take this drug until the result is <1, but I don’t understand based on what the result should be at <1.

Are any of you the same as me? HBV DNA is positive. Is it possible that it turns into a negative?

The positive thing for now, I can start accepting & telling my pain to my closest circle. When we are ready to tell stories, it also helps our health. And another is I didn’t expect that I found & be able to join this community. I can learn more information about hep B and support each others. Thankyou.

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Dear Lisa,

Welcome to the forum. We are glad that you found us!

I am sorry to hear of your HBV diagnosis but as you will see by looking at other posts (especially from our moderator Thomas Tu), it is possible to live a long and happy life with HBV. Unfortunately, I am not familiar with how to get help with HBV medication in Taiwan. The medications we are talking about are entecavir (ETV) and tenofovir disoproxil fumarate (TDF) which are cheaper as they are not patent-protected and tenofovir alafenamide (TAF) which is more expensive since it is still under patent protection. These medicines are safe, easy to take and to work very well to control the reproduction of the virus in your liver and protect you from developing liver disease.

You are missing (or have not yet told us) about one of the most important tests which indicates how your liver is functioning. This test is called alanine aminotransferase (ALT). The level of this enzyme in your blood tells your doctor if there is potentially liver damage occurring. An elevated ALT result is usually a sign that you should start treatment with one of the drugs above.

We hope to keep hearing from you.

Best regards,

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Hi Lisa,

Thank you for sharing your story. I am in no position to be giving medical advice or anything of the sort, I’ll leave that to our @ScienceExperts

However, what I will say is I’m sorry that you have experienced this shock and are having to deal with this on your own in a foreign country. I was the same when I was diagnosed. I’m from the UK and only found out I had chronic HBV two months ago after moving to Korea so I understand how hard it must be to not have your usual support network around you to deal with it the news of your journey with HBV taking such a turn.

Thankfully, everyone here is super nice and from hearing other people’s experiences and doing my own digging, the majority of people that do go on antivirals live as normal and healthy a lifestyle as any other person. I would recommend you check out the “When to start treatment” thread on here for more information and the recently opened “Research Showcase” thread.

Take care, and I wish you all the best! :heart:

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I agree with all the others @lisagege8 and thank you for sharing your story. Just to ease your mind, drinking a single beer would have very little to no effect on your virus levels or liver disease. And unless you are constantly sleep-deprived, I’m not sure it matters when you actually go to sleep.

To answer your question, I am currently on treatment for my Hep B and I don’t feel any different at all. My virus load is very low after being at more than 100000000 before I took the drugs. It is possible that the virus goes away in the blood (undetectable), but it is likely to stay in the liver so you should keep taking it.

A support group that might help is THiCA. @Jacki, maybe you could provide some help here? Are there ways where there is support for foreigners to get easier access to treatment?

Just know you are not alone, Lisa!

Thomas

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Hi Lisa,
As @ThomasTu indicated, we have a facebook group and a LINE group mainly for people living in Taiwan (and neighboring areas), and we might be able to help with issues related to hepatitis B treatment in Taiwan. You are most welcome to join our group here: 台灣肝炎資訊網 | Facebook
I do not completely understand your situation. It sounds like that you are HBeAg positive and is currently under self-paid antiviral treatment, because you are not qualified treatment reimbursement by national insurace? In any case, I wouldn’t recommend discontinuing your medication due to cost. Please join our group and we will find a way to help. Many patients in Taiwan have to self-pay for antiviral because of stringent reimbursement guideline, but we found ways around it by, e.g. switching to generic, so most people can continue their treatment. Feel free to contact me at anytime. Best wishes, Jacki

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Hello All
Happy new year 2022.
I am Abbas SAKA, from Benin (West Africa). I have been a carrier of hepatitis B since 2008 but I did not take treatment because I had learned that there was no treatment these deasese. Since 2021, I started taking my situation seriously and seeking for more information about the deasese. It is in this recherch i finded this site.
Thank you for allowing me to join this group.
I hope to learn more for my well-being and to share the new knowledge with the people who suffer from it here in silence.

Abbas SAKA

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I am Chinese female at my 30th. I have chronic hepatitis B as long as I know. I think I got it from reused needles at a small Village in China at late 80th and early 90th when I was very young, my mom does not have it. I don’t need medication for it right now but I have been monitored once a year with blood work and ultrasounds. I don’t talk with people about my status besides my family because I have seen a lot of discrimination towards people who lives with HBV in China. It was sad to see it. I am so glad that I find this place . There is a lot of good information regards live with HBV. Thanks Thomas for creating this Community!!!

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Im Benjamin from Germany, i got hepatitis b on 2015 without knowing it. So on 2019 i got to know it through blood test and i started herbal medicines and supplements. Early this years January 2022 i went for another blood test and i tested negative to Hepatitis b. So my doctor collected some of the medications i took and he was suprise. I also went for Hepatitis b DNA and all is negative. I want to encourage all that there is hope never give up

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In due time if the group allows i can share some of the herbal and the medicines i took to get rid of hepatitis b. Is curable but the healing process take time minimum is 6 months.

Hello I am new, just found I tested positive for hep b and at the moment I am really scared. My wife is 35 weeks pregnant and she now have to get tested! I haven’t sleep and eat for days and having a hard time coping… I am located in the USA, 43 male.

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Can you share with us? I am hoping for a miracle.

Hi @Tnn

Welcome to the group! I understand your concern about being HBV+. This community has scientists, physicians, caregivers, and people living with HBV+ on it and is very welcoming and supportive. Others can chime in with more details, but in short, you can have a long and happy life being HBV+ with regular care from your doctor. Members of this community have testified to their experiences, and as a senior HBV researcher, I find their stories very uplifting.

In the short term, I urge you to speak with your physician, and to read the wonderful posts on HepB Community. Folks here can help. It is also really important that your wife be tested soon and her OB/Gyn be made aware of the test results. If she is positive, current medical interventions are really good at stopping transmission to the baby. Be sure that your baby gets the first dose of the HBV vaccine right in the delivery room–that is the biggest step to stop a possible transmission.

I wish you and your family the very best.

John.

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Welcome to the forum, @Kty! We are quite happy to have you here!

John.

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Welcome to the Community! We are happy to have you!

John.

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