Deciding when to start treatment

General Discussion
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Hi @Limin ,

I am glad that posting my results helped you in any way; or anyone for that matter. Results can be daunting, especially when you don’t totally understand what they mean long term for your life. It definitely helps to know that there are so many people that understand what we all are going through. Not because you want anybody else to suffer what you go through, but just to know that you are not so alone.

Since your doctor says that the size of your portal vein is standard then try not to worry about it too much. Since you don’t have cirrhosis and you can keep good control of your lifestyle to help your liver from becoming cirrhotic, then hopefully your portal vein will stay within limits. Monitoring every 6 months to a year is probably a good idea though. All I know is that having issues with your portal vein can lead to varices and then that can be an issue as variceal rupture can be life threatening. But even then, there are medications that can help with portal hypertension and lessening of varices if caught and treated early enough.

What your friend’s mom has gone through does sound somewhat similar to my situation although my platelet and white blood cell count is almost always low. The 5 hepatologists I have had through my lifetime have never pushed interferon as treatment for me. I have never had a positive outlook towards interferon however, so maybe that swayed their opinions a little. Anyone that I have ever personally known or heard about through a friend that had interferon treatment, had horrible side effects and I had never wanted to take it because I didn’t want it to ‘interfere’ (see what I did there?) with my career back then.

I don’t believe that interferon is promoted too often nowadays since there is TDF and TAF that usually helps most patients reduce their HBV DNA significantly, but that’s just my own observation and I don’t truly know if my observation is correct.

I wish you the best on your schooling endeavors in the U.K. and in your life throughout,

-Paul

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Thank you Paul, I’m easily scared so I do my ultrasound pretty much every two month, one minor situation I’ll be panicking :weary: I’ll try my best to stay a healthy lifestyle and I hope you’re the same; Hopefully you can stay healthy as now for long time! In China so basically from what I know, most carriers when they been on Anti virus meds for a long time and the Virus DNA becomes undetectable, Dr would suggest them to take a look into their HBSag number, if it’s starting to lower than 2000, they will let the patient know there’s a shot for it to turn negative, or if the patient is on Anti virus meds but having fibrosis situation in ultrasound, they will suggest anti virus meds+ interferon to slow down the cirrhotic, yes there’re a lot side affects to it, like losing hair or feeling tired. I thought it would be promoted a lot in country like usa cause there’s 30/100 chance for carrier to turn negative.

Thank you for your kind reply as always Paul I wish you all the best .

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Hi puallyHBV

I am one of your admirers. I like the way you have fought the virus and how strong you are amind all the adversely. I also like the way you articulate issues.

Your story is a story that can be told again and again without anybody getting bored. It’s a story that makes all of us strong and have hope for tomorrow.
I know as an adent reader you are aware I am struggling with HCC with no cirhosis and my fibrosis being 6.8kPa. No mass was captured by U/S or CT scan 12months ago. I intend my experience to help others although am shocked how this lesion has grown from zero to 3.5cm×3.0cm in a year.
Your input is appreciated.

Kinoti

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267

Hi @kinoti ,

Thank you for the kind comments. However, I always feel like I am not portraying things properly or saying things well. I for sure am quite wordy and could take a lesson from how concise you are in your responses.

I am sorry that I have not responded to your posts about your HCC. As I have explained in other posts, I am not very good at keeping all this terminology and information straight. It just seems so overwhelming at times. I’ve seen some laypeople in this community with such an intelligent understanding of some pretty technical concepts.

Regardless, I should have posted some words of support for you. I am still trying to get my head around the fact that you can get HCC without cirrhosis. I had thought that the scarring and ongoing damage was what could cause HCC. But again, I am a novice at this stuff. I am interested in how things progress for you and also interested in the scientific side of what is happening, even if I don’t understand it fully.

I have noticed how you respond to many posts and how a lot of community members, especially from your region respond so well to you. Keep up the good work! Funny thing is that I don’t look at myself as strong. I looked more at you as stronger than myself.

That’s what is so great about this community. It’s not just the information or the access to experts, it’s the support and strength that we can receive and give to others when we don’t even know it.

You hang in there and continue to be an inspiration for those that need you.

Keep us updated. Best wishes,

-Paul

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268

Hi puallyHBV
I have gone through your response and I am impressed with how you and other view me.

Thank you and may our God have a way of restoring in you what has eloded due to long term pain.

  • kinoti
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269

Just want to share the status of my treatment.

2022-04-14: Start taking anti-virus after doctor’s advice and info from this forum; DNA: 2.5e8; GPT: 92
2022-05-16: One month after aiti-virus; DNA: 9.0e4; GPT: 82
2022-07-12: Three months after anti-virus: DNA: 1.8e4; GPT: 123
2022-09-12: Five months after taking anti-virus: DNA: 828(8.28e2); GPT/ALT: 63

Based on my data, is everything going all right? great? normal?

Appreciate any comments.

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270

Hi @steve_chen,

Looks like the antivirals are working and both your ALTs and viral loads are dropping down to normal. This should be considered a good sign!

Cheers,
Thomas

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Hi Thomas and other expert
As a counselor, I have tried to avoid being in denial on my current situation. However, I cannot avoid asking some partnent questions here. Not for me, but for us all. Thomas tries but where he hits a dead end nobody picks up- other experts. I am experienced in hep diognosis and care. I have been mishandled by health professionals and care about a repeat.
Last year for example I went to this good hospital for my annual checkup.My viral DNA was 5203iu/ml.I was back after one month and this time it was 1823iu/ml with cholestisis and elevated ALP. Shocked, I went to another hospital. The viral load was undetected, normal ALP and no cholestisis.
Today I ask you this, CECT can diagnose HCC 1cm (and more)with about 92 % specificity . It takes roughly 220 days for HCC to grow by a centimetre. Dolutegravir tablet (on it’s label) causes liver injury. —The CT scan can’t diagnose my HCC, it’s 5.6cm,I have no symptoms, last year I had no lesion. Are things adding up? Could I be misdiagnosed?Yes,I have a lesion seen in us and CECT.The CECT calls it a typical lesion becau it lacks the characteristics of a tumor (Can it be liver injury cased by dolutegravir?)Should I trust be biopsy results or get a second opinion?
Kinoti

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Dear @Kinoti,

Thanks for your questions. My understanding is that the figure used for the growth of a tumour is based on an average: each tumour behaves differently in different contexts and has its own speed of growth (Growth rate of early-stage hepatocellular carcinoma in patients with chronic liver disease - PMC). Indeed, poorly-differentiated HCCs are more linked to higher growth rates.

In my quick reading, Dolutegravir can cause increases in ALTs, but actual liver damage very rarely. Moreover, my understanding is that drug-induced liver damage would not generally present as a mass such as this.

Liver/tumour biopsy is considered the most accurate test for identifying what a lesion is, I don’t know if there is anything else that could additionally help. @HealthExperts, perhaps you could provide some insight here.

Thomas

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Hi @Thomas
I have done alot of reading since I found myself in this scenario.
Before then,my understanding was that with undetected viral DNA and hbeg -ve it’s was very rare if not impossible to get HCC. However,I have learnt that ARV we take don’t act on the virus already integrated into the host DNA which leaves hep b patients with un ending risk of HCC,even when they have cleared the virus.
I have accepted my predicament and moved on. I am waiting for IHC report to know what the future holds for me. I may not have enough financial muscles but I will humbly take whatever life presents.
Please continue praying for my mental strength.
Be blessed.
Kinoti.

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Hi @ThomasTu
I must thank you again for always being here for us.
I do concur with you that liver biopsy is the gold standard for testing almost everything that happens in and with our livers.
My concern at that point was “biopsy falsity and second opinion”. Having been misdiagnosed twice in 2021on hepb DNA rebounds has always concerned me.
Have already learnt how to seek a second opinion by transfering the same biopsy “blocks” to another laboratory, which I won’t do.
Kinoti

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Dear @kinoti,
I am sorry to hear about your condition and situation. I hope there will be good options for you that come out of the test results. Yes, you are right about integrated HBV DNA. I have been studying this form since the start of my career 15 years ago and the field is still trying to understand how it drives cancer.

Your want of a second opinion after your experiences is understandable and you may be appropriate if you want that peace of mind. I’m not sure if the IHC report will also include some histological findings.

Yours sincerely,
Thomas

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My name is Elnext I’m so glad to be part of this forum.
In November 2021, I was diagnosed with Chb. My ultrasound was okay but i don’t know if my ALT and AST below is okay too. I am in Nigeria I can’t afford DNA test it is too costly here. Things are very expressive in Nigeria.
I finally found a pharmacy were i got Tdf (mylan).
Can I start taking this drug now, I have waited long for this drug. I don’t really know how my liver is doing now.
I am also concerned that my spleen has grown large I can feel it.
I have waited long for this. We are already in October now. I can’t wait anymore since I have the drug now.

ALT 41IU/L
AST 27IU/L
Date of test March 2022

images
images498×616 19.8 KB

Do you have any thing to say about this drug

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I am about to go see my doctor but I have a followup question. With low viral load etc, apart from the usual side effects of drugs and cost issues, is there evidence pointing towards it being more advantageous to begin treatment even when you don’t meet WHO guidelines? Others can bear in too. If I knew starting treatment aids in stopping progression, I would consider to start right away. Anyone who was confronted with such a decision?

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@CNN i have the same question.

I have an appointment next Friday with a liver specialist because I don’t know if being on medication is better. I read prior Doctor @Suwang88 was advised to be on TAF with a low viral load (~2000iu) and no raised ALTs and @availlant recommends it even with a low viral load because of evidence of DNA integration. But the guidelines (which my doctor - gastroenterologist- follows) don’t recommend it so I have a follow up meeting with a different doctor he recommended for me as a second opinion.

But I’m confused.

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Dear @Albasil808 @9ext @CNN,

Thank you for raising what I think is a very important question: should I start antiviral earlier than is recommended by current guidelines?

These guidelines are there for a reason and they are backed by clinical trial evidence as well as cost-effectiveness studies. These are generally conservative (only change when there is strong evidence, e.g. randomised control trials with detectable easily measured biomedical benefits). However, there is also recent data showing that things like HBV DNA integration occur very early on, there can be inflammation even with normal ALTs, etc. that suggest earlier treatment may have benefits later on in life. There are also likely some benefits in limiting onward transmission.

The recommendations may not change until there are enough clinical trials to show these benefits (which will likely need to look at many many people and/or take a long time), but many people are suggesting earlier treatment might be better based on the information we know now.

In the meantime while this discussion takes place, you want to make a decision now. It is very difficult for me to tell you specifically what to do because the risks and benefits are different with each person. There are particular issues that are important to keep in mind:

You have to keep taking it. You will need to keep taking the antivirals for what might be many years or decades; it can be very dangerous and even deadly to stop taking it (even if you are feeling good) unless under close monitoring by your doctor. This means you need to make sure you can afford it and it is available where you are. This might get complicated when you move to different countries. If you don’t fall under the current guidelines, the costs may not be covered by insurance or subsidies.

Taking antivirals doesn’t mean stopping your monitoring. It is still very important that you undergo monitoring to see if the antivirals are working, and if there are other causes of liver disease that might be building on top of your hep B. It is also worthwhile checking out your viral markers to see what stage your infection is in.

Side effects. Though these are very safe drugs, you can see from the other threads, some people do experience some side effects. I myself haven’t, but we do hear from people who do.

I also want to rush to say, do not take any of these (or others’) posts here as medical advice. We are simply here to provide information. Any decision should be taken between you and your health professional.

Thomas

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281

Hi Ccheng, I have ~2.8cm hemangioma on the right lobe of my liver since 1997 when it was firs time discovered. It stays pretty much the same size for many years. I know some other people for years, who have a multiple of hemangiomas of different size and are doing ok so far. It is more common and benign condition, then I realized before.

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Hi- I posted a year ago about my young adult daughter who contracted HBV as an infant, likely from her birth mother in Asia. I have been having trouble getting gastro/hepatologists to seriously consider antivirals because of her young age, and because paradoxically her ALT and DNA levels seesaw, sometimes in opposite directions.

  • Her DNA in the past 5 years has varied from a low of 700 to a current 4300.
  • Her ALT has varied from 49 to a current 23 (it seems to be lower with one particular lab).
  • Fibroscan score of 4.4 and “0” fibrosis. The ultrasound showed fatty liver and “probable fibrosis,” but no lesions. Her doc said the fibroscan is more accurate about the fibrosis.
  • She has been e-antigen negative and e-antigen positive for about 10 years, after gaining and losing clinically significant surface antibodies in her teens.
  • Her quantitative surface antigen (drawn for the first time after I pressed for it) was more than 14,000 !!!

Based on these labs, her current doc is willing to start antivirals. I have a few questions:

  1. He would like to do another liver biopsy first, just to get a better picture of her liver. Her previous biopsy around 4 years ago was normal and showed no inflammation. Would anything be gained by putting her through this again? She is resistant to it and it is of course not risk free.

  2. I’m concerned about the extremely high quantitative surface antigen level. (It is odd because the lab took 6 weeks to deliver the result, so I wonder if it is accurate.) Does the SAg titer track the DNA level (which was 1200-1600 in the past year, and now jumped to 4300)?

  3. Once started, we understand that she will likely have to take antivirals for decades. Is there any evidence that antivirals will not be effective in reducing the odds of HCC or fibrosis with a surface antigen titer that high? I’ve tried to research studies online, but haven’t found anything directly on point.

Sorry about the long post. Any thoughts will be so appreciated.

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Dear @EBAB,

Welcome back and thanks for your questions. You are understandably concerned, but it looks like you are doing the right things with your daughter maintaining monitoring.

  1. Inflammation and fibrosis can occur within those 4 years. But do consider whether it would change the decision either way to start antivirals.
  2. It is common for young people to have high HBsAg levels (myself included). HBsAg titre does not necessarily track with HBV DNA levels (in any case, your daughter’s is still fairly low at 4300).
  3. Yes, antivirals do reduce the odds of HCC and fibrosis even with high HBsAg levels. Most people’s HBsAg level does not change during treatment, but it does almost always lower the risk of liver disease progression.

Hope this helps,
Thomas

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Thomas, as usual your responses are clear and extremely helpful. Thank you so much. I’m relieved that antivirals can still be protective despite high HBsAG levels, and that younger people tend to have higher levels anyway. I will ask her doc for more clarity on the goal of the repeat liver biopsy.
I read all the posts religiously and can’t imagine what I would do without the support of the science experts and community members who share their knowledge and experiences on this board. Thanks again.

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