Deciding when to start treatment

Thanks @ThomasTu for your time and patience in answering my questions! really appreciated!

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Dear abcde,

In general, NUCs work to suppress viremia which in turn lowers immune mediated liver inflammation and ALT levels. This is the real reason to treat chronic HBV infection - block the continual liver inflammation that leads to progression of fibrosis and the development of cirrhosis.

However, NUCs have a long studied but not widely discussed ability to stimulate immune function (this appears to be strongest for TDF/TAF). So in some people, ALT flares do occur during NUC therapy when there is no rebound of viremia. In these cases, these flares do not affect normal liver infection because they reflect selective removal of infected liver cells by the immune system.

This creates some confusion for patients regarding the worry over ALT levels. A simple guide to follow is:

  1. ALT elevation with increased viral load or changes in liver function are usually a sign to switch NUCs (typically from older generation NUCs like ADV and ETV to TDF and TAF).

  2. ALT elevation with no increase in viral load or changes in liver function is a sign that the immune system is removing infected cells from the liver, in which case you should not change your NUC therapy.

Hope this helps.

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Thanks @availlant for such a detailed explanation! It is really helpful!
Sorry for being pydantic. Can I ask if NUC stand for nucleus? NUC therapy = antiviral treatment?

Can I have one more question?
I remember I’ve read somewhere saying starting antiviral treatment at the wrong time may lead to virus mutation. Is it something I should worry about? My doctors seem not worried at all.

Thanks again for your time!

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Hi abcde,

NUC is a short form for NUCleos(t)ide analog which is the chemical name for the class of compounds that includes ETV, TDF and TAF - sorry for the lingo!

There is no issue with mutation and when you start NUC treatment these cases are exceeding rare with ETV, TDF and TAF.

Best regards,

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Thanks @availlant ! what a reassurance! really appreciated it!

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A post was split to a new topic: Hep B and drug development: What do you want to know?

Hi,

About 15 months ago I was diagnosed with HepB. Since then life has come full circle for me. While 15 months ago my viral load was higher than normal, it came down in the next annual visit. Yet my Hepatologist suggested to initiate the therapy and since then I have been on TAF. From within, I was hoping my doctor would suggest to start the therapy as it seemed logical to start early after reading many posts in this forum. I am just sharing a few things I wanted to share after an year of diagnosis:

  1. Focus on quality of life is important. Yes, you never wanted to happen it to you but it happened and its best to deal with it than being in a continuous state of disbelief

  2. There are a lot of Ifs and Buts in HBV. It is best to leave it to the doctors and researchers. Reading too much literature wont help if you are not from the medical field. Get a good doctor and follow their advice to the best you can

  3. Your diagnosis does not impact just you but your family too. Protect them first and work to get them a peaceful life. If you panic they panic exponentially even if they don’t show it to you.

  4. Keep chasing your goals… to stop is to drag yourself further into the misery

Thanks to @ThomasTu and @Joan_Block for creating a forum like this. How to use it is up to us. I choose to read happy posts and posts with people sharing similar experiences knowing very well that each person is living a unique experience yet some people are doing somethings right and we need to learn from them.

Cheers!

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Hello Paul, since you’ve been a carrier your whole life can I ask you how’s your ultrasound like over the years?

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Hi @Limin ,

I was diagnosed in 2017 with cirrhosis. This was a couple of years before hepbcommunity came into existence. I have always wished that I had this resource back then so I would have known to get my test results. Now, my test results only go back to 2019. At some point, I am going to do a records request from the hospital where I was first diagnosed with cirrhosis, because I want to have exact numbers from back before I started treatment and my HBV DNA was in the millions.

I only have a couple of US results but they have also done CT scans and MRI’s multiple times over the past few years. I think the CT’s and MRI’s are more accurate or specific than Ultrasounds? But they are much more costly than ultrasounds, so I don’t think they do them regularly unless you have cirrhosis?

Even though I was a network engineer and also worked in IT most of my life, I have always had a hard time understanding and keeping liver lab terminology straight. Working in one technical field doesn’t mean it transfers over to other technical fields. I basically understand surface antigen, antibody and DNA viral load. I went looking through what results I have access to and there is so much medical terminology that I have looked up and I still don’t understand a lot of it.

I don’t know what data you are looking for, but if I was to post each full result then this would be about a 20 page response, so I will just give you the summaries of each test from 2019-present. If you are looking for something more specific, let me know. I am also having an ultrasound at the end of this month. I didn’t get ultrasounds at the normal intervals the past few years obviously due to the pandemic. It looks like the tests basically have the same impression throughout. I also get endoscopies every year and last year had esophageal varices surgery which was not well tolerated. One good thing is that my AFP tumor markers have always been negative. Although, my last colonoscopy ended with surgery on multiple pre-cancerous cysts even though the colonoscopy 2 or 3 years prior showed nothing. My current GI said that it should take much longer than a couple of years to end up with pre-cancerous cysts up to the size of what had to be removed, so he was a bit perplexed by that. I have no clue if potential cancer in one area of the body precludes cancer in other parts of the body, especially organs that are already impaired, but I don’t think so?

I hope this was what you were looking for and it helps because extracting and posting all this data took me about a year… jk!

-Paul

06/17/2019 CT Scan

IMPRESSION:

Normal caliber of the patent aorta and its branch vessels. Inflammatory fat stranding surrounding a patent inferior mesenteric artery, nonspecific, with focal vasculitis not excluded.

Nonspecific 1.5 cm hypodense lesion in the right hepatic lobe with possible peripheral enhancement, incompletely evaluated on this study. Further characterization with hepatic protocol MRI recommended, particularly given findings of cirrhosis.

Apparent wall thickening of the distal esophagus is likely secondary to unopacified periesophageal varices, with esophagitis or neoplasm not excluded.

Nonspecific 7mm left lobe hepatic hypodense lesion.

Hepatic cirrhosis with sequelae of portal hypertension including splenomegaly, prominent umbilical vein and multiple portosystemic collaterals including prominent periesophageal and perigastric varices. Minimal free pelvic fluid.

Cholelithiasis without CT evidence of cholecystitis.

09/26/2019 CT Scan

No acute intrathoracic abnormality. Specifically, no evidence of intrathoracic vascular abnormality.

Cirrhotic configuration of liver with multiple subcentimeter hypodense probable hepatic cysts.

Cholelithiasis

08/03/2020 US

IMPRESSION:

Suggestion of ventral supraumbilical abdominal wall defect measuring approximately 1.4 x 3.8 cm, with suggestion of herniation of abdominal contents, possibly bowel into the defect. If clinically indicated, CT may provide further specificity.

08/27/2020 CT Scan

IMPRESSION:

No acute intra-abdominal or intrapelvic abnormality.

Cirrhosis with sequelae of portal hypertension including splenomegaly, prominent recanalized umbilical vein and multiple portosystemic collaterals including prominent periesophageal and perigastric varices. Possible hepatic steatosis.

Cholelithiasis.

04/05/2021 US

IMPRESSION:

Cirrhotic and borderline enlarged liver. Hepatic steatosis. Findings of portal hypertension.

Splenomegaly.

Cholelithiasis without sonographic evidence of acute cholecystitis.

09/30/2021 MRI

IMPRESSION:

No hepatic lesions identified suspicious for hepatocellular carcinoma at this time.

Cirrhosis with sequelae of portal hypertension.

Similar to slight interval increase in conspicuity of a 5 mm cystic lesion in the pancreatic tail, possibly an IPMN.

Cholelithiasis.

04/15/2022 US

IMPRESSION:

Cirrhotic configuration of the liver with signs of portal hypertension including mild splenomegaly and prominent portal vein.

Cholelithiasis.

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Thank you Paul for the reply, I appreciate you for finding these records to share, I’m living in China right now, but I’m seeking for school in UK, very worried about what’s my future like when I start to take meds, my biggest fear is ultrasound, every time my ultrasound come back good/normal, but last time show up a number 11mm on portal vein, which makes me extra anxious, I went to recheck this morning, still everything seems fine, just this number show up, dr told me it’s in normal standard but I’m still very afraid. And after seeing your story, it’s very similar to someone I know, my friend’s mom, when she got diagnosed it says “cirrhosis” in her report, I believe it also mentioned “spleen is larger than its usual size, blood platelet is under normal standard” she’s been on TAF for 5 years now,last time I check on her she told me her spleen is getting to regular size, and Blood platelet is back to normal also. Also do doctors in usa suggest you to try “interferon” treatment? Or they only want you to monitor it while take anti virus meds. I hope you all the best!

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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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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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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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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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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

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

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.