INTRODUCTION THREAD: People affected by Hep B

I hope so too. I have read some studies from China that showed reverse of liver damage from cirrhosis when antivirals were introduced. But it depends on how much damage we are talking about right? Stage 1&2 maybe you have some chance. Stage 4 is probably far gone I will think.

Let’s hope everything works out well for you. I appreciate you sharing this because it’s good for hepatitis B patients to hear things like this. These things are real and do happen. Best, Bansah1.

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Hi geomo
Welcome to hepbcommunity forum. Thank you for sharing your hepatitis B journey to our community and many helpful suggestions for living with this complicated and dynamic virus. You have your laboratory results with platelet count 112,000 which is low and your clinical status are in the compensated cirrhosis.Are you have any other comorbidities such as DM , Hypertension, ALD , MASLD ?
According to American Gastroenterological Association Institute (AGA) and Baveno VI criteria , if you have liver stiffness measurement (LSM) from Fibroscan between 20-25 or more and platelets count < 150,000 , you have the risk of clinical significant portal hypertension ( CSPH) will have high risk to develop esophageal varices and should be screened by esophagogastroendoscopy . To avoid decompensated cirrhosis , you should have lifestyle modifications and stop drinking alcohol and smoking to maintain liver health. Another one is immunization with hepatitis A vaccine. You should consult with your doctor about long term monitoring about your liver conditions. I hope this can help you . chul_chan

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Thank you, @Bansah1! Yes, I agree that it depends on the severity levels of the cirrhosis. When you mentioned stages, what did you refer to? I don’t know my stages of the cirrhosis. I just learned from my GI that my current MELD score is 7, which is low. My fibrosis scan in April was 18.4 (KPA). I will talk with my GI next week. I may need to consult with her about my stage. Thanks.

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Hi @chul_chan, thank you so much for your reply!

I have an appointment with my GI next week discussing the esophagogastric endoscopy. I don’t have other comorbidities, but my platelets is low and my KPA score is 18.4, which is risky. I am modifying my lifestyle by taking low sodium diet, more exercise, more sleeping time, and quitting alcohol drinks. I quitted smoking for many years. I will talk with my GI about the Hep A vaccination. I appreciate the information you provided. This is very helpful!

Sorry, I meant stages of fibrosis. Liver cirrhosis is classified as compensated or decompensated. Decompensated stage is when the liver is in bad shape and mostly one has a low survival rate. The person might have jaundice, ascites (fluids build up in the abdomen) plus other markings. I am attaching an image that might help provide some visual clarity on how the liver looks through each stage. Each stage is a little worse than the previous. This is not meant to scare you, it is just informational. I hope this at least gives you a rough idea of what I was trying to share with you. Best, Bansah1

@Bansah1
Ok, now it makes sense of the four stages. I knew the four stages of the fibrosis progress and the cirrhosis is the stage 4. So you don’t believe the cirrhosis (early stage) can possibly be reversed, right? I read some publications saying it would be possible but I know I am checking the literature with a filter of hope. Anyway, I will do my best to stop or slow down its progress, at least. Thank you for your information.

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Hi @geomo,
Sure, it can. I am an optimist so I will say it is possible if the cirrhosis is not far gone. I have seen some research that has shown reversal, so do not lose hope. Keep your fingers crossed. I like the idea and the positive attitude of doing your best to slow down the progression or reverse it. That is what is within our power, right? Hang in there. Bansah1

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@ geomo
It’s my pleasure. I also had experienced about HBV journey for 30years or more , during 1990 that I had been diagnosed with chronic active hepatitis ( the term used at that time) equal to phase 2 HBeAg +ve immune reactive phase . It took about 2 years that I could turn seroconversion from HBeAg +ve to HBeAg -ve and finally turned to inactive carrier stage(phase 3).During this phase(phase2), my teacher (hepatologist) suggested to use low doses interferon @2b which was the only drug available to treat chronic hepatitis B at that time but I didn’t accept due to its side effects and low response rates and I wasn’t sure that it might interfere with my body immune responses. I decided to used regular exercises at that time and hope that it would boost my immunity. At the end of struggle with phase2 , I told my teacher that I would not like to follow up because there were no effective antiviral drug and it made a lot of pressure and anxiety. I only followed AST/ALT after that time annually and the value were in normal range. I ignored CHB and forgot it and ultrasound surveillance weren’t done. Like many CHB patients , they didn’t aware about this complex disease due to their healthy and wellbeing status. Fortunately, over a period of 10 years, there are high resistance barriers nucleotide analog with minimal side effects that can suppress this virus to undetectable. I think it’s time to expand the treatment criteria abd effective surveillance to cover eligible CHB patients without barriers to access.
So , your compensated cirrhosis, in my opinion I think your liver may have plasticity like other organs in human bodies such as brain. I recommend you to use additional meditation /mindfulness that may help support liver health and healing processes. It can reduce stress , inflammation and activate parasympathetic nervous system . It also improve the gut-liver axis and gut microbiome ecosystem like @ Bansah1 has commented . I hope this may help you .

https://search.app/dKN7UbipX1oM5HeG7

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@chul_chan
Thank you so much for sharing your experiences. I am glad to see that today there are options for us to control the virus, though I realized this too late. I hope people can learn from my experience and manage their health more actively from day one. I agree with you that meditation and mindfulness will help. I am an optimistic person so this is beneficial for me to keep a more positive perspective. Thank you so much for your suggestions!

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Hi @ geomo
Our human body has a miracle process that God has given to all of us . If fibrosis can reverse to normal liver tissue, decompensated cirrhosis can reverse to recompensated cirrhosis. The question is “ Why compensated cirrhosis can’t be reversed “ ?
I think that it may take times to allow these tissues to the healing process if you don’t take anything that damages the liver and finally, they can heal spontaneously and recovery. I hope you doing well and healthy.
chul_chan

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Dear @geomo,

Yes, early stages of cirrhosis can be reversed (over time) with antiviral treatment (74% after 5 years!) - Regression of cirrhosis during treatment with tenofovir disoproxil fumarate for chronic hepatitis B: a 5-year open-label follow-up study - PubMed

Thomas

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Dear Thomas,

Thank you for sharing this publication. It is very interesting that last night I just found this publication when reading another one Reversal of liver cirrhosis: current evidence and expectations. I haven’t read the paper you shared yet but it is so nice to see such high reversal rate using the Tenofovir. I have been using Tenofovir for three months and my HBV DNA count was decreased significantly (from 2.8million to 29). It is really encouraging. Thanks!

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Is there any greater difference in life when viral load reduces say from 2000 to 30 after taking antiviral drugs???

Or maybe its simply a reduction in figures???

Hello, I have just joined this community and I’m so glad to have finally found a forum with other hep B carriers just like myself.

By way of introduction, I am from Australia and born in China. I got hep B when I was around 5 years old in China and I am now 47 years old.

I started taking teniforvir 8 years ago and my liver tests have always been normal with the virus not detected.
However the last 2 years my ALT have been slightly elevated with the recent test being 39.

This is worrying me a lot. Ultra sound and MRI is normal however MRI did mention liver is slightly bumpy indicating some degree of cirrhosis. Liver fibro scan was normal.

My specialist told me not to worry and ask me to take vitamin D (as I was low) and vitamin E supplements.
Wondering if anyone here is also taking any supplements like D & E and are they beneficial?
What about mik thistle?

I have lately been trying to eat very healthy with a lot of vegetables and cut out sugar and snacks.

I also have 2 kids who are both vaccinated at birth but I am now also worry about them as I heard some children can still catch it from birth even if got the vaccination.

Recently since the elevated ALT I have been feeling very depressed and anxious so I am glad to be able to express my feelings here.

Thanks for listening to me and best wishes to you all.

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Hi Ellen,

Welcome to the community. We hope you find great resources and support in this forum.

Thank you for sharing your story with us. It is great to see you maintaining your monitoring and treatment. Keep it up!
As for your worries, it is understandable you feel this way. If you would ever like, you may share your results in the Lab results - Hep B Community category.

To answer your question about milk thistle. It has no positive effect on HBV. Have a look at this post for further info: What is silymarin (milk thistle), and is it helpful for managing my hepatitis B and D? - Hepatitis B Foundation

If you are worried that your children have Hep B despite the vaccine, mention it to your family GP for more information and if they can provide a pathology test to check their antigen and anti-body level.

All the best,

Sumaya

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Hi Sumaya,
Thank you for your prompt response and information on milk thistle. Wondering if there was any information regarding vitamin D & E supplements?
Are there any dietary guidelines for hep B carriers?
Yes I will book my children for a blood test soon, hope they are both negative.
I will also upload my pathology results when I get a chance.

Thanks
Ellen

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Hi @Opa,

This probably depends on the ALT level at that point as well. In general, the lower the HBV DNA, the lower the disease progression in later stages of a chronic infection.

Dear @Ellen,

Thank you so much for sharing your story and welcome to the forum. It’s great that you are looking after your liver health and hopefully to feel empowered in your fate in doing so.

To allay some of your concerns, the fibroscan is probably a better indicator of liver fibrosis level. Regarding your ALTs, it is worth looking at other causes that may be driving it (e.g. fatty liver or other liver infections). Did you get a CAP score from your fibroscan too (this is helpful in understanding if you have fatty liver)?

Thomas

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Hi Thomas,
Thank you for taking the time to respond.
I did a fibro scan last year and was told it was normal, I don’t recall getting a CAP number. Wondering how often we should be getting fibro scans?
I had an ultrasound sound done on the weekend hopefully everything will be ok. I am very anxious and feeling depressed.

Thomas, I have been watching your videos on YouTube and thank you for the wonderful work you are doing for us! I am also in Sydney and wondering if you can recommend any liver specialist who specializes in chronic help B? My current gastroenterologist is lovely but will be good to get a second opinion.

Also I am wondering if any evidence of switching medication from teniforvir to entecevir have any benefits?

Thanks for your time and all the best to everyone.

Regards
Ellen

Dear @ellen,

Sorry to hear about your test anxiety, but it is definitely something we in the community often encounter. It does get easier over time, but never entirely goes away. Thank you also for your kind words, great to hear from a fellow Sydneysider!

To answer your questions:

The frequency of fibroscans will depend on your current risk of disease progression. For example, patients in relatively stable phases (e.g., HBeAg-negative, normal ALT, very low HBV DNA level) or on antiviral therapy require less monitoring by fibroscan compared to those with elevated ALTs. Your specialist should be monitoring you accordingly.

Most gastroenterologists will have a website where you can see what they specialise in. I would recommend you look around for something close to you through this.

If you have no problems with your current medications, there is no clear benefit of switching.

Cheers,
Thomas

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