Thanks very much Thomas for your kind attention. Correct, my Mom died of HCC.
Today I visited my hepatologist and discussed the family history, who still did not recommend the antiviral drug for my case; he believes i would gain less especially the fibroscan result of F0-F1. He expects me to take regular check and visit him every six months.
He did mention that he can treat me if I strongly wish so, and highlight the side effect of TAF would be mainly weight gain. He said, although the family HCC may scares me, he believes the major cause of such family tragedy is due to lack of health check and timely treatment as needed (he believes direct HCC by hep B virus is extremely rare).
I consulted with him on the new involvement of treatment expansion in US and China, he replied he keeps abreast very well of these progress and also very familiar with the experts who developed the guideline. He politely educated me that the way he treats me is supported by his decades of clinical experience with thousands of his patients and their outcome. His fellow mentioned to me that, part of the reason why the treatment criteria was expanded is because lack of regular check and monitoring for many people who are able to access.
I was somehow convinced as the place I visited represent the best specialist in the country I live. So I fully respect the doctor’s medical opinion and leave the treatment request in the next regular check with him after thorough consideration. At the same time, it seems hep B is a complicated disease we actually don’t know exactly what is happening inside the body even there is mature guidelines can be used.
Therefore, would you pls help me input further so that I could make mature decisions?
Or is it rather TDF (the “older” tenofovir) has some lipid-inhibiting off-target effect, which TAF doesn’t have (and, as a result, people switching from TDF to TAF might experience some weight gain)?
I’m personally 3rd year on TAF, my weight is stable, BMI within norm, I eat what is considered healthily (vegetarian/pescatarian diet) with moderate amount of exercise.
Patients with HBeAg-positive or HBeAg-negative chronic HBV infection and family history of HCC or cirrhosis and extrahepatic manifestations can be treated even if typical treatment indications are not fulfilled (Evidence level III, grade of recommendation 2).
So you are within your rights to consider therapy given your situation. However, this is of course a personal decision and needs to be made with your own context in mind.
On the research side, there is more and more evidence that there are cancer-associated changes occurring in the liver, even before it is observable clinically (e.g. liver inflammation has been reported even with normal ALTs; there is HBV DNA integration decades before cancer, etc.). It has not been directly shown that these will lead to cancer down the road (which is why such early treatment is not a recommendation), but there is also lack of evidence against it too.
For my own decision, I have thought about which side I want to err on: treatment before it is necessary to prevent chances of ill-effects, or waiting too late and not catching the liver damage.
Hope this helps frame the current understanding in a way where you can make an informed decision.
Hi DZ6,
Welcome to the forum and thanks for sharing your story and experience with us all. I am of the same opinion as Thomas, that when it comes to treatment it should be started early rather than later. And also if a patient want to start treatment they should be able to do as well. This opinion seems to go contrary to the treatment guidelines. What I will suggest is to continue to have an open and honest conversation with your provider regarding this. Let him/her be aware of your worry or concern and how you really feel about treatment. I did not start treatment immediately, rather it was almost 2 years after my diagnosis before a treatment was recommended. This can vary between providers. I think the important point is as long as the provider is talking to you, explaining things so you can understand and be able to ask questions along the way; and you are open to the provider, things should be alright. Keep this conversation going with your provider so you can get frequent updates on where things stand and whether anything has changed. keep your appointments so the monitoring can continue, very important.
Best, Bansah1.
Reminder that I am not an expert in the field or a medical professional.
I think the short answer is that CHB is pretty much the same regardless if it is acquired at birth, as a child or as an adult. The experts may have a more elaborate response to this. As to your upper right quadrant pain, this is a perplexing issue as doctors will tell us that the liver doesn’t feel pain but yet, so many of the affected community experiences this pain. There are so many posts in these forums about this particular pain and other pain that have yet to be associated directly to HBV, CHB or antivirals.
I do not know the answer to this so we’ll have to wait for the experts to respond, but here is the definition from The Hep B Foundation: IgM anti-HBc: A subclass of the hepatitis B core antibody (HBcAb or anti-HBc). Positivity indicates recent infection with HBV (less than 6 months). Its presence indicates acute infection.
I think it depends on how severe your diagnosis is, but the best beginning rule of thumb is, all things in moderation. However, you want to eliminate or keep anything toxic to a minimum like smoking, drinking, etc. When it comes to going out to eat, when done in moderation, you can look for healthier alternatives. Less fried or processed foods, less salt, less fat, more protein and more fiber. For example, they make some pretty good tasting entrée salads nowadays. Maybe opt for an Asian chopped chicked salad instead of the fried chicken sandwich. I know it can be so tempting but you can find better for you, but still tasty alternatives when you go out.
Lastly, I know it’s easier said than done but don’t stress yourself out so much about your upcoming ultrasound. Don’t worry about HCC and cirrhosis if/until you get to that road. Stress only makes your liver work harder. Again, easier said than done. Be sure to update us once you have the results of your ultrasound and until then do your best to distract yourself from it and not focus on it.
That’s a great question and I think the real answer is we don’t know. There is some evidence that maybe it is different: there are particular genotypes in areas of the world where adult or horizontal transmission is the more common route (e.g., Genotype A in North America and Western Europe). This appears to be more responsive to interferon and results in more HBsAg-loss if there is cessation of long-term nuc therapy. Whether this is due to the genotype itself or the mode of acquisition is not very clear.
As mentioned by other users, anti-HBc IgM is seen when a person has been exposed to the virus for the first time in the last few months. The result of this exposure (whether it becomes chronic, or if it is cleared and is an acute infection) depends on multiple factors, including age as you’ve just mentioned.
Thank you very much for the detailed explanation, you guys are amazing. Before I found the community I felt lost, trying to investigate on my own has been very complicated, there is a lot of information out there and sometimes it can overwhelm you,
What make you believe that you got it within the last 5 years? Just curious
My personal belief, which is just within my thoughts. At, let’s say 50 years of age, there “might” be a difference between for having chronic hepb for 50 years vs 20 years. But then there might not be because one could be fine for 49 years and hep b just going full damage ( my term) and damage the body.
Just believe within yourself that you are ok and you ll be fine. Believe you re sick and you will be. Mind has a powerful effect on the body
My diagnostic has been a weird one, I dont know if I should call it bad luck or not, as. I mentioned before, I was diagnosed with hep B 2 weeks ago.
My tests show positive S antigen, positive total core antibodies, negative e antibody and positive IGM core antibody, all the symptoms of a regular acute infection right?
Well I tried checking old physical exams and in 2020, in the middle of the pandemic I had my last physical to check my overall health, in the results I see that the hep b core antibody total came back positive, but let me tell you whats funny about it, my doctor then, never called me to inform me of this… I know, but it gets better, I have been vaccinated 3 times in the past against HepB, although the timeline of vaccines was not the best, my doctors scheduled those vaccines, and yes these were administered in New York.
I will attach pictures of all 3 below, tell me your thoughtss guys, I dont know whether to cry or laugh, this is the reason why I assume I was infected somewhere between 2018-2020, all physicals examns show no virus prior to 2020.
I forgot to mention here that @nina.le.bert did a great study on the immune system as it is exposed to HBsAg (Effects of Hepatitis B Surface Antigen on Virus-Specific and Global T Cells in Patients With Chronic Hepatitis B Virus infection - PubMed). The study here suggested that the longer you have hep B (and have the immune system exposed to HBsAg), the weaker it became towards the virus. This would predict that if you acquire it during adulthood, the immune system has a better chance of clearing it down the track compare to if you acquire it during childhood and your body has been exposed to the HBsAg for so long. Is this a reasonable interpretation of the study, @nina.le.bert?
Hi @many723, these seem to be vaccinations with the pediatric dose, which is about half the dose as the adult dose. If you were an adult during this time, it may not have provided the appropriate amount of protection and you may not have known if anti-HBs tests were not done. Even if you were given the appropriate dose, a decent proportion of people do not raise protective antibody levels after the full course (5-15% of adults - Hepatitis B Foundation: Vaccine Non-Responders).
Yes, a positive HBc IgM would suggest recent exposure, but would normally not be hanging around for 2/3 years. Perhaps some @HealthExperts could give a comment here.
Yes Thomas I was on TAF but I stopped because of lactic acidiosis shortness of breath and the rest. Now my GP is telling me to start taking it. Is it safe to start again without my liver suffering? Please respond
Antiviral treatment is much more likely to protect your liver than harm it, so it is something you should definitely consider. If you are having effects from TAF, then you should perhaps talk to your doctor about alternatives such as TDF or ETV.
I am also currently considering starting treatment (35F diagnosed in 2010 but probably had it from birth/as a baby/toddler). I live in the UK and the recommended drug here is TDF for females planning on having kids. I have read some posts here saying that there are no side effects from TDF for years on end but I am absolutely terrified nonetheless as 35 is still very young. Are you aware of any studies around TDF/TAF/entecavir side effects? I have a million questions and I cannot seem to easily find the answers I’m seeking.
These drugs have been in use for many years now and the safety of them has been well-established. I myself am on TDF for many years with absolutely no problems so far (I am 36). We do have a thread discussing side-effects here (Possible side-effects from antiviral therapy) that may answer some of your questions.
It’s also important to keep in mind that the virus also causes effects (liver inflammation and injury) that are prevented by these medications, so not taking them is also a decision that can affect your health.
AncaSD
It is my first time to interact with you and am happy you are here. Parhaps very important for you to note is that our bodies are unique and as such react to deseases and treatment in an unique manner. What we normally have are general guide, ie how majority of the people are affected/react. I myself have an upside story with Hep B infection and am still here strong for others.
Kinoti
Hello @Godsaveme
It is extremely important for you to be on anti-viral treatment, if the doctor says you should be. If the doctor says you should be on it, it means that the virus is attacking your liver and it is being damaged. So, the sooner you get back on antiviral medication, the better for your liver.
Speak to your doctor. There are alternative anti-viral treatments that do not have side-effects, as you have experienced.
Keep Ask informed on how you are going and what you decided to do.
Blessings
Dear Thomas Tu.
I thank you and the forum for the experience sharing.
I am still NOT under any treatment.
I am damn tired.
Extreme numbness of my feets and hands and needle like pain on both.
Chest and back pain.
Coughing sometimes.
Itching body specially head.
My HBV DNA is below 20 IU/ML and AFP increases by the day. 22 IU/ML
7. No concentration at all and my brain seems empty.
The doctor would not let me start treatment still!.
Mild liver fibrosis still exist.
ALT and AST are slightly on the upper limits.
Direct bilirubin is always high while total bilirubin is normal.
I fully understand the purpose of the forum and not to be substituted as a doctor.
But I would really appreciate your traditional support/ experience sharing on the above. I am confused and almost to give up.
Thanks for your question and I’m sorry to hear about your suffering. There is no evidence that starting on treatment will solve these issues as 1) these are not generally symptoms caused by Hepatitis B and 2) your HBV DNA levels so low already. As you say, this forum is not for specific medical advice and the best plan would be to visit your doctor to investigate the potential sources to your symptoms.
Hello everyone kindly asking if I am in a right truck or wrong, have noticed that the guild line of starting treatment is when someone have the viral load of greater than 2000 u/ml and hepatitis b antigen was positive
But in my case my first initial viral load was 825 u/ml and liver function
Creatinine - 116.2
Urea - 2.80
Asat - 34.3
Alat - 31.4
Total protein - 72.4
Ggti - 23.1 u/l
I also did liver scan and kidney which all the tests was Okey but I was put on treatment for TDF/3TC (Truvada) when I asked the doctor why I was put on treatment I was told that ’ it’s difficult to tell if I had the virus for a long time or short time and I was told to take the drug for 6 months and do a retest again’ 'now looking at my viral load and the guild line is there anything that I need to worry about. I will appreciate a lot for your response
