INTRODUCTION THREAD: People affected by Hep B

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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Dear @777asaka, @Kty, @Benitopi, and @Tnn,

Thank you all for joining the forum and sharing your story. Each one helps so many others feel seen and less alone, so the whole community appreciates your openness. I also appreciate your kind words about hepBcommunity - it is really personally rewarding to see.

@Benitopi: it’s good that you ended up clearing the virus, but there are also many herbs and supplements that can harm the liver because regulations are very lax in terms of making sure that these are pure substances. So what is labelled one thing in one brand can be completely different from something else from another brand (or even the same brand in a different bottle). We advise a lot of caution when taking these and always letting your doctor know if you are taking them because they may react with your body or medications you are taking.

@tnn: I’m sorry to hear the situation you’re in, but it is a good thing that you have found out early and before the child is born so that something can be done about it. I wish you both all the best for the upcoming birth. Please keep us up to date if you can.

Cheers,
Thomas

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I am CNN and new here. Been trying to find the average % reduction of risk as a result of treatment for CHBV. Many articles I have managed to read talk of reduced risk without giving some data.

Dear CNN,

Welcome to the forum. This is actually quite a complex question and the answer depends on many things:

  1. Lower risk of what? Disease progression, death, transmission, inflammation, cirrhosis, cancer? All of these are probably decreased with antiviral treatment/nucleoside analogues, though perhaps to different extents.

  2. What phase is the patient in? Immune tolerant, carrier, HBeAg-positive or -negative, already cirrhotic or with cancer, how high is their viral load, age, HBV genotype, patient ethnicity, etc? Each of these will have a different answer and indeed there is controversy still in the field as to whether antiviral treatment is useful for all cases. It gets even more complicated when you think about all the combinations between all of these factors.

  3. Which treatment? Interferon, entecavir, tenofovir, lamivudine? A lot of the newer treatments that are being researched will not have this data yet.

Researchers have found that if the conditions are not narrowed down, then the range of the answer is so broad that the single answer we get is close to useless.

Hope this clarifies things a bit.

Thomas

Very useful. Was hoping there are researchers who have a rough average based on all those variables or at least based on their sample population. I understand I can’t generalize since each case is unique. Problem is many articles make it sound like it’s not known or researched.

4 posts were merged into an existing topic: Deciding when to start treatment

Hello Tnn. Welcome to our group. Thanks for reaching out. I have lived with this disease for over 40 years.
Please don’t worry, it isn’t too bad having HepB as long as you get monitored every six months.
Get your wife tested, then vaccinated if not a carrier.
Your doctor and this group can help you gain all the knowledge you need. I wish they were around when I got diagnosed. Here you will find lots of professional people who freely give their advice.

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@Caraline Thank you for the support and encouragement. It’s really tough at the moment trying to navigate through the mental aspect of it. I am so thankful for a supported wife and the stories I’ve been reading on here for the last wk or so. Two wks ago, I was looking forward for my baby arrival and plan for her future and I never thought in this lifetime i have to plan for my survival. She will be the reason i fight for this disease! In God we “hope”! Thank you Caraline.

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And in God we trust. Don’t let anything steal your “joy” of the birth of your child. This is a trial you must go through. Be of strong courage. We are here for you.
Any questions or worries-someone is usually here.

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Welcome to the Forum MzMimi.

Its difficult to respond accurately to your concerns without knowing more details about your HBV infection and the test results your doctor used to say that your body fought it. It would also be useful to know if your spouse has been vaccinated against HBV and when. However, here some things to keep in mind:

  1. People who resolve their HBV infection (this may be what your doctor meant by “your body fought it”) are usually not infectious. There can be a slight risk of transmission during sex however.
  2. There can be many reasons behind your spouse’s weight loss. This is not a typical presentation of HBV infection and based on your message, your spouse does not have active HBV infection.
  3. Weight loss can be a side effect of statin usage.

I do not see anything to suggest you should be concerned you transmitted HBV to your spouse.

Hope this helps…

Dear @MzMimi23,

Thanks for sharing your experiences and welcome to the community.

As @availlant mentioned, it is difficult to know what’s going on without the Hep B blood test results. It does sound like you may have cleared the virus and are now protected, but that will depend on what the actual blood test results are.

On the issue of exposure, that is one of the more difficult things to know. Hep B in many cases is asymptomatic and you may have been exposed at any time during your 60 year lifetime. While it is classed as a sexually-transmitted disease, the truth is the majority of people with HBV were exposed either during birth or early in their childhood (through normal scratches while playing, etc.). Some people are exposed as adults through medical procedures (reuse of needles, blood transfusions, surgery, etc), scratches, tattooing, sharing of razor blades, etc. To some extent, it doesn’t matter where you got it from, but that you are safe now.

Thomas

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Hi great team I must say that iam a knew member in this forum,.I was diagnosed to have hepatitis B in the year 2018 when I had gone to donate blood. It come as a shocker to me and Life took another different view.
Currently I have been experiencing Alot of challenges physically and emotionally,
I don’t know what has been your experience with Hep But I have been experiencing ,some constant Low grade fever,my weight had reduced,I have a facial rush and this has been worrying me Alot.
Last year I did a viral load and that copies were At 805,
Kindly could you share with me your personal experience

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Dear @kennedy,

Thanks for sharing your experiences and sorry to hear about your challenges. The first thing is to try to understand what is going on in your liver. This would involve getting a doctor to do the ongoing monitoring and having a routine blood screen (LFTs, HBsAg, anti-HBs, HBcAb, HBeAg, anti-HBe, and viral load - which you have already received). Your doctor may also suggest you get an ultrasound or fibroscan to see if your liver is hurt or not.

Many of us with chronic HBV have very different experiences: I personally have not felt any obvious symptoms from my infection, but others have definitely been through physical and mental challenges like yourself.

Hope you read some of the other threads and explore this community.

Cheers,
Thomas

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Hello to all the wonderful patients, doctors, community members, and patient advocates of this community forum.

My name is David Urick. I’m a 33-year-old man that lives in the United States. I was born in South Korea and adopted to the state of Michigan when I was 5 months old to my wonderful family. From the information my adoptive parents have about me, I have had Chronic Hepatitis B since birth.

I was taken to a hepatologist and told in detail about what it meant to have Chronic Hepatitis B for the first time when I was 13 years old. From what I understand about my Hep B on a somewhat medically literate and personal level, since my teens, I’ve been HBeAg positive with an accompanying high viral load (in the hundreds of millions IU/mL at some points). Even though Hep B was explained to me in a compassionate but still factual way, I struggled mentally after learning about the diagnosis and didn’t feel like I had an outlet to talk to someone that would understand how scared I was. This led to a suicide attempt at 14 years old and subsequently many years of struggle with mental illness and self-medicating with street and pharmaceutical drugs in my adolescence and early 20s. I talked about the possibility of medication in the future at one of the few doctor’s appointments I managed to attend in my 20s and I wasn’t receptive to the idea.

Fast forward to late 2018 and the end of my 20s. I’d been sober from all drugs besides the occasional joint of cannabis for quite a few years now. I consider that a time in my life that has passed but that I can always take lessons from.

In early 2019, I received a liver biopsy from the University of Michigan which came back with no liver damage whatsoever. I agreed to do the biopsy under the advice of my liver doctor, who is Dr. Anna Lok of the University of Michigan. I am extremely privileged to have had her as my Dr. for many years. However, I didn’t visit the clinic much at all from the ages of 18-29, nor did I receive the blood draws they suggested I get done twice a year to have liver function tests run. My message from this is that yesterday was the best day to start taking the best care of yourself as a patient, but today is the next best day.

After my biopsy, I started Tenofovir Alafenamide after a few months and a couple of visits with Dr. Lok and her PA (who I also wanted to shout out as being great)! My viral load has been undetectable since around 3 weeks after starting the medication and my liver has been very healthy ever since.

Some side notes about myself…

I attended a #justb storytelling workshop hosted by the amazing people at Hepatitis B Foundation. The reason I attended was that I watched one of the #justb stories on Facebook and was so moved by that experience. Someone from the Hep B Foundation reached out and invited me to come out to make my own video. Ever since that experience, I’ve been involved with Hep B patient advocacy. This currently involves me telling my story in various forums and to different audiences from my perspective with all the successes and challenges I’ve gone through. I also have written a couple of articles about living with Hep B as a patient.

When I’m not working or doing advocacy work, my hobbies include rollerblading both in a recreational and extreme action sport way, biking, hiking, cooking, gardening, writing, painting, reading, playing video games, and hanging out with my girlfriend and my two cats!

I am very much looking forward to interacting with this community. I’ve done a bit of browsing and have seen some familiar faces. Hi @Joan_Block and @Suwang88 :smile::wave: This is a wonderful place and I wish something in this format existed when I was a teenager. Sometimes just being able to talk to a fellow patient can make all the difference in the world.

I’d also like to give a quick shout-out to @ThomasTu for getting good information about the medical aspect of Hep B to the patients and people that need it. I watched your presentation on the last day of the World Hepatitis Summit, it was great!

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Hi David,

Welcome to the community! Thank you for sharing your story. I also wanted to welcome you to the subset of South Koreans that were adopted to the U.S. that have CHB. I know there are others but just to mention @Joan_Block (of whom you already know), @NeptuneJ and myself.

We share a somewhat similar story, except that I am older and was adopted in California. I echo you and many others that wish that we had had this community way back when. I would have been happy to have this community when I was old enough to understand and before I had fibrosis. Heck, I would have been happy having these resources 5 years ago when I was diagnosed with cirrhosis.

Again… Welcome to the community! I look forward to more of your sharing and contributions to this group.

Paul

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Hi Paul,

Thank you for the warm welcome. I’m very happy to be here, a place with so much knowledge coupled with compassion.

I have to say it was pretty amazing learning there are other adopted South Koreans in this very community including Joan! :slight_smile:

You make such a good point about how important communities like this could have been/can be for people when they are going through tough times as patients. I can only imagine the strength it took you to get to where you are today and I’m glad to be among people like yourself here. I am so happy to now have this community be a part of my life.

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Great intro post, @DavidUrick. Welcome to the community and hope you can provide some of your experience and knowledge here for others to learn from!

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Me, my brother and my sister have a chronic HBV since birth or early childhood. It is possible that we have it from our mother who has become HBs-Antigen negative 20 years ago. She ist 70 years old now. I have the chance to participate in an VIR-3434-phase-1-study. I hope someone in this group has already experienced the shot. That would help me a lot.