Thanks so much, @ThomasTu!
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Hi. I’m mid forties and have had hep B for over two decades. Ive been on treatment and undetectable DNA and normal liver enzymes for years. I had a platelet count come back low recently and I have had a bit of nausea lately. I’m heading in to see a hepatologist soon. Had been seeing a GI. I have so much fear and anxiety about what could be happening it has really been difficult to deal with. I really don’t know if something is major wrong or not. My platelets have been normal two more times since being low on two occasions 125k and 98k. I had a recent US that stated slightly heterogenous echo texture, which I hadn’t seen before on an imaging of my liver. Bleeding times, ammonia, bilirubin have all been normal. It’ll be a couple of weeks to see the liver expert, but in the meantime I have lost my senses a few times over this. Any insights letting me know I’m not going to die tomorrow would be helpful. Just being real.
Hi me DNP
I am sincerely sorry for your latest feeling. I hope and pray nothing is very wrong and you will go over it and continue with your normal life. Meanwhile, feel warm in this community and all shall be well. We are here for one another since this is a war we must conquer together.
Regards
Kinoti.
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Dear @MeDNP,
Thank you for sharing your story and sorry to hear about the stress you’ve been under.
As you can see from this active community, many people live normal lives even if they have hepatitis B or liver fibrosis. You are not likely to die tomorrow, as you have been living for decades with it already. Just know that you are doing the right thing and getting the right care.
Hope this helps,
Thomas
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Hello all
First contributor here. Apologies for not reading all the previous posts.
I’m a 43 year Chinese male living in Beijing. I was first diagnosed of HBV when I was 12/13 years old. Back then the doctor said no treatment was needed as: i) there was no cure. ii) many patients could live with it without serious consequence. In retrospective I regretted that I may have missed the best opportunity for treatment. But it was in the early 1990s and China was a very poor nation which meant the medical staff in a small town where I grew up lacked the proper training and I even doubt there was a guidline available to the medical staff like today. So as much as I regretted it, I could understand. Though no proper treatment from the said doctor, my parents did buy some Chinese medicine from a private firm for me that was proclaimed effective only to be proved later as a scam. Then in 1996 my condition was discovered to worsen after a medical check conducted by my university. This time I received a treatment suggested by a new doctor which was thymopolypeptides injection(I don’t know if it was the correct English translation). I cannot remember how long this treatment went on. I think it was probably three to six months before it ended. My condition was stabilized but without any material improvement. Suggested by my uncle who is a surgeon I turned to the Chinese herbal medicine afterwards. After taking the herbal medicine for probably one year my HbeAg turned negative. I believed those herbal medicine was working then but was less sure about it now(my attitude towards Chinese medicine in general has changed a lot during this period of time due to the fact that their working mechanism is not clearly scientifically defined). Around 1998/1999 I stopped the herbal medicine and have been off treatment of any kind till the Aug of 2021, during which I did do a regular blood test and ultrasonic scan annually though. The ALT has been within the normal range though what should be defined normal is open to interpretation among countries as I later found out. I just carried on as a normal healthy person without giving it a second thought only with the exception of drinking(I don’t drink. The most was a few cans of beers and one or two glass of red wine per year). A few doctors suggested I should take antiviral therapy which I declined. It was during this time my grandfather and a uncle both from my mother’s side died of cancer. One of them may have died of liver cancer.
Then last June my results showed that my ALT was abnormal. The MR result showed there were multiple small hydatoncus/cystis (I don’t know if it was the correct English translation) which my doctor said were fine, no need to worry about them. Later I reflected on what might cause the worsening of my condition: i) being over 40 years of age may statistically mean that my body is not as strong as it used to be. I read quite a few papers on HBV which placed patient older than 40 years of age as high risk. ii) I was on medication for a short period of time before the HBV test to relieve body pains after I got injured when doing some heavy lifting at GYM. And I also took a medicine a few times for insomnia as well. Those drugs may contribute to the results. And iii) the HBV inside my body is re-activated now more than before.
With those results and my medical history, my doctor strongly urged me to take antiviral treatment with Entecavir to begin with then interferon injections. She recommended the latter as a means to reduce the likelihood of progression to HCC after she learnt my grandfather and an uncle died of cancer. I also sought advice from a second doctor about the interferon. He seemed not so keen on it as the first doctor. Both doctors work in hospitals that are in the top ranks in China in terms of treating HBV patients. I have no reason to doubt their expertise on the said subject.
Now I have been taking Entecavir since then but undecided on whether I should take interferon later on. My primary goal, if I decide to go ahead with interferon, is to reduce the risk of HCC considering my age and my family medical histories.
That’s my story. English is not my native language. So please let me know if my words confused you. And I wish all the best to you all!
Li
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Dear @bloke,
Welcome to the community and thanks for sharing your story. No need at all to be self-conscious about your English, it is perfectly clear. We also have many Chinese speakers on the forum here if you need to reach out in your native tongue (e.g. @Jacki, @yuan, @stao, @Stephenw, @Civilke ). There are also some Chinese resources here: Hepatitis B Chinese webpage launched.
It is good that you have found some top specialists to monitor your condition. Entecavir has been shown by many many studies to reduce the risk of liver cancer, so you’re doing the right thing in terms of achieving your goals.
Hope you can find the support you need here,
Thomas
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Hi Li,
Welcome to the community and thanks for sharing your story. I just wanted to say that you are very articulate for speaking English as a second language.
-Paul
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Thank you Thomas for setting up this community. I believe many me included will and can benefit from this community and hopefully I can help others in one way or another. So keep up the good work.
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Thank you Paul for the kind words. I’m fortunate to have learnt English during my days at school. Originally I had planned to join a Chinese online community. But surprisingly I couldn’t find a good one. So I turned to Bing.com and ended up here.
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Hello Kaipe
I wish you all the best!
Li
Hi bloke.
Welcome to the community. You are definitely in the right place where you will find encougements and splice.
Kinoti
Hello Kinoti
Thanks. I hope you too can get the help you need here. All the best to you!
Li
Hi Li, just wanted to add my welcome to you, too. So glad you found us. And your English is perfect. We all understand you. The question about whether to start interferon to reduce your risk of developing HCC is interesting. I’ve never heard of any physicians recommending both Entecavir to treat HBV and interferon to reduce HCC risk. In my opinion as a knowledgeable nurse and who lives with hep b, I do not think that you need to take interferon. Assuming the Entecavir reduces your viral load to ideally undetectable and that your ALT levels return to normal, then your risk of progressing to HCC should also be reduced. Not even sure why your doctors would want you to take another drug before evaluating whether you’re responding well to the Entecavir?!! Hopefully other medical experts can weigh in (calling @Jacki, @Jack_Wallace and more) and either confirm what I’m writing to provide other feedback to your question.
In the meantime, my suggestion is to wait until you hear from other medical experts on this forum before making a final decision about interferon. And hopefully the Entecavir will be enough. Thank you again for joining this forum and please keep us posted on your journey. Always, Joan
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Hi Yadong Li @bloke,
Welcome to join here and to share your hep B journey. Your english is almost perfect and certainly better than mine. I am in the US but originally from Taiwan. We have a Chinese language FB group dedicated to viral hepatitis. If you can use facebook, welcome to join us @ 台灣肝炎資訊網
Since a few experts here tagged me to contribute to answering your questions, I am sharing a few thoughts here with everyone. However, I think your knowledges and your doctors’ expertise are at the forefront of HBV management.
The purpose of your doctor suggesting to add interferon (peg-interferon, specifically) after entecavir is actually to increase your chance of functionally curing HBV (make HBsAg disappear). If that works, then yes, your risk of developing HCC will be further reduced. There were a few such trials in China, and some do show increased efficacy of this sort of “add-on” strategy. If you are functionally cured, then you can safely stop all HBV medication. However, a recent presentation by Dr. Norah Terrault pointed out that another trial of combining entecavir with peginterferon did not work, so whether you want to take this strategy as recommended by your doctor is really up to you, since there is likely some side effects of peginterferon, some of the side effects could be long-term and might worsen your insomnia. I am attaching a link to the presentation by Dr. Terrault, which is contradicted by Dr. Kennedy for your reference here: When to Treat Immune-Tolerant Patients with HBV (B肝免疫容忍期何時該治療) - YouTube
In any case, I think you will be just fine with long-term entecavir alone (or TAF, which a generic is available now in China), since you don’t seem to have much liver damage yet.
Best wishes, and thanks for sharing again. I am hoping to be able to get connected with you as well, since we are also trying to learn from our Chinese experts on the other side of Taiwan strait.
Jacki
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Hi Jacki, so nice to see your thorough response above - thank you! And the only additional thought I have about @bloke is that east asians (e.g. Chinese, Korean) tend to be genotype C hep b, which is the genotype known to not respond well to interferon. So not sure that it would even be given here if @bloke lived here in the U.S. I agree with you that the potential side effects of interferon are something to seriously consider. Especially if the benefit is not clear. Anyhow, I don’t want to confuse @bloke even more. Just raising the genotype issue in case you or any other medical experts have thoughts on this. Thanks again. Always, Joan
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@Joan_Block Thank you for your response. I’m glad that I came across this community and became a member of it. Originally I had wanted to join a Chinese online forum. Unfortunately I couldn’t find a good one that is active. One community of which I am a regular used to have a sub group dedicated to HBV but stopped due to the lack of traffic(this community is a commercial one that pursues the max traffic). I was very surprised by the fact that we lack good online communities in China as I believe we have the largest HBV infected population in the world. There should have been many. On the other hand this may be a good sign if we look at it from another perspective, which is that there may be less prejudice now than before in China. Some online communities here were set up campaigning for equal rights or privacy for HBV patients. Over the last decade or so, I did see some measures taken by the authorities to combat the unequal treatment towards HBV infected. The social and medical security system also offer insurance for drugs etc making them more affordable though to quite a large population of patients I would say the drugs are still expensive. But broadly speaking things are moving towards the right direction. As a result probably less people turn to online communities for help.
I think Interferon reduce the HCC risk by inducing a loss of HBsAg as suggested by Jacki. But it is a long shot. Only a tiny fraction of the patient can achieve that according to my research. I think this conclusion has been generally accepted. What I wanted to know is that whether it still holds if HBsAg loss is not achieved.
Your suggestion about the genotype was noted. I will discuss with my doctor next time. I’m sure there is going to be a full test beforehand to see if I can meet the criteria used to predict the outcome of Interferon on me.
But as you advised I will hold my decision till I get sufficient information.
Have a good day!
Li
Thank you for your kind words. Unfortunately it was very difficult for me to access Facebook as it was banned in China. But I can access the website you refer. I will check it later.
I will study the paper you referred. The side effects are indeed something that cannot be ignored. This is also one of the reasons that I am hesitating on if I should get Interferon. Statistically the benefit is negligible while the cost is very high. I shall carefully weigh those factors before making up my mind.
I will be pleased to get connected with you too. Anything I can help you with regarding what the Chinese experts are doing please let me know.
Li
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Hello, everyone my name is Tefera Mengistu Hussen my Country Ethiopia 
I living Dubai in Al Ain I am so happy to seen u all groups.
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Hi Teferalov
I am glad to read from you. Your greetings are also well received. Do you have anything to share with us on hbv such as experience or expertise. We will be glad.
Kinoti
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Hello!
I am 44, have been diagnosed with HEP B during a blood donation 8 months ago.
At that time my viral load was 1700 and Fisbroscan 5.13 kpa.
Since 8 months I have been taking Tenoviral.
I have never drinked alcol and even before I have been eating normally, no fried food etc.
One or two months after starting the medication I feel movement in the liver area and a small discomfort.
Has this happened to you or this is a bad sign.
Many thanks