When to discontinue chronic hep b treatment

Living With Hep B Treatment and Monitoring
41

Hi @ThomasTu @ScienceExperts and all,
I’m new here, but I’ve been reading the threads here regarding stopping treatment. I have a very high viral load but been having normal ALTs and normal ultrasound results. My doctor do not recommend me restarting treatment and now I’m getting very concerned if that was the right decision. Sorry, I will provide all my lab details at a later time, because I don’t have the exact numbers with me at the moment. What are the guidelines/advice for someone with normal blood work and normal ultrasound with high viral load ~ 600 million. I am very scared at the moment with all the information I’ve learned from this community. A little background, I was on Tenofovir for 12 yrs, my hepatologist advised me to stop treatment during pregnancy, start again during third trimester, and stop again for nursing. Been having my regular yearly check ups, and was told to stay off medication because of my normal lab and ultrasound results even though viral load was increasing. I’ve been off medication for 4 years. Now, I’m questioning if that was the right decision from my doctor after joining this community. I am looking for another doctor for a second opinion. But right now, I am very worried and extremely scared.

Can we rely on labs and ultrasound to determine the condition of our liver? I haven’t had a fibroscan done lately.

Should I wait to get a fibroscan done before starting treatment?

Or I should be on treatment immediately?

Update on results:
Sept 2024 August 2023
Creatinine 0.70 0.88 (0.57-1.00)
eGFR 112 86 (>59)
BUN/Creatinine Ratio 14 13 (9-23)
Albumin 4.4. 4.5 (3.9-4.9)
Globulin,total 3.0 2.6 (1.5-4.5)
Bilirubin, total 1.1 1.5 high (0.0-1.2)
AST 28 23 (0-40)
ALT 27 22 (0-32)
AFP no results in 2024 5.3 (0.0-6.4)
Bilirubin, Direct 0.23 (0.00-0.40) No results in 2023
HBV IU/ml 673,000,000 758,000,000
Vitamin D 25.0 28.4(30.0-100.0)
HBsAg Positive
Hep Be Ag Positive

Ultrasound: the liver is normal in echogenicity. No focal hepatic lesion is identified.
Biliary System: the common bile duct measures 2mm in diameter, within normal limits.

Impression:
Unremarkable examination.

Please let me know if any other information is needed that would be helpful.

Thank you in advance.

Scared and worried,
Cher

42

The reasons to treat all HBV DNA+ patients

  • HBV DNA+ correlates with risk:

  • (risk of HCC, cirrhosis, LT and death)

  • And ? FH of HCC or cirrhosis

  • Risk of Transmission

  • Rx to prevent infection- Reduce Stigma

  • Improve QOL

  • Reduce HBV related extrahepatic disease

  • Decrease Other HBV related cancers (bile duct cancer is an example)

  • Reduce Discrimination

  • Partner with Patients who request treatment

43

Thank you for replying, @rgish Dr. Gish. You shared things I was not aware of. I wish I had knew about this community sooner. My doctor told me everything looks good besides my viral load but not concerned unless I have pain and jaundice, and I can follow up every 8 months. I am having a lot of doubts now.

Based on my labs and ultrasound results, do you think I have developed bile duct complications or any of the ones you listed?

44

Welcome @Cher1
I am shocked your doctor said, no treatment unless pain.
The danger of HCC is there is no pain. That’s why it’s important to have bloodwork, scans regularly.
I don’t want to scare you and hope I haven’t but as you’ve read in this forum that information is not that accurate.
Someone else with professional knowledge will give you more info. What country are you in?
@ThomasTu @Bansah1 @availlant

2 Likes
45

Hi @Cher1,
Welcome to the community. I agree with @Caraline and @rgish, delaying treatment can lead to serious liver damage especially someone in your situation with this higher viral load. You doctor followed the guidelines for pregnant women, but once your viral load started increasing treatment should have been started even with normal LFT’s and ultrasound. HBV viral load of 673 million is very high and treatment should be started.

Here is a link to the recently released HBV treatment guidelines released by the WHO and simplified by the Hepatitis B Foundation:

You can share this with your provider about the reason to start treatment so you can lower your viral load and avoid any serious liver damage. I hope this helps. Best, Bansah1

1 Like
46

Quick reminder

LFT s is an old term

Current terms: we should use:

Liver enzymes ALT AST AP and GGT

Liver function Bilirubin, INR, albumin

Liver panel : includes liver enzymes and liver function

47

Important comments here from Bob Gish.

In chronic HBV, liver enzymes do not reflect actual liver function.

NUC therapy should be started ASAP with this high HBV DNA titer.

@availlant

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48

Why do we propose to treat all patient with HBV who are HBV DNA+?

  • HBV DNA+ correlates with risk:
 *   (risk of HCC, cirrhosis, LT and death)
         Treatment decrease risk: 70% less HCC
         90%+ decrease risk of cirrhosis and liver transplant
  • Decrease Risk of Transmission U=U
 *   treatment to prevent infection
  • Reduce Stigma
  • Improve QOL
  • Reduce HBV related extrahepatic disease
  • Decrease other HBV related cancers (bile duct cancer is an example)
  • Reduce Discrimination
  • Partner with Patients who request treatment
  • Meet WHO elimination goals

Thank you Andrew

2 Likes
49

Thank you so much @Caraline @Bansah1 @availlant @rgish for the welcoming and your insight. I am in the US.

When I saw my doctor last year, the labs for my viral load was pending. So when I went in for my follow up this year, I was surprised how high it was and had an uneasy feeling about it. I tried to stay off the internet because it can be a scary place but I just needed more info. And that’s how I found this wonderful community! I love how everyone is so supportive and kind.

I have reached out to my doctor requesting to start treatment. Now, I’m waiting for the call.

I was wondering does it matter which I take TDF or TAF? I was on TDF for 12 years with no issues that I’m aware of. But the idea of having a smaller pill like TAF with less side effects sounds like that would be a better choice.

Again, thank you all!
Cher

1 Like
50

TAF is preferred due to very low risk of renal and bone toxicity. Vs TDF

ETV has not renal or bone issues (but small risk of resistance, <2%)

TAF vs ETV better ALT reduction and possibly lower liver cancer risk

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51

@Cher1

@rgish has given clear and correct information about treatment options.

Re; I had an uneasy feeling. It’s amazing how our bodies let us know when things are not right. :smiling_face_with_three_hearts:

Blessings

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52

What then reflects the liver function perfectly???
I too used to base on the status of enzymes to determine the liver function

53

Dear @Opa,

It is important for the community to note that this disconnect between liver enzymes and actual liver function is something specific for chronic HBV infection and not for other liver diseases like MASH (fatty liver disease) or alcohol mediated cirrhosis or autoimmune hepatitis.

The reason for this is that immune mediated processes in the liver can selectively attack infected liver cells and not harm the other uninfected cells in the body. This leads to increased amounts of liver enzymes from inside these infected cells being released without affecting the normal reservoir of liver function.

Tests which are specific for liver function (in all diseases) include bilirubin, albumin and INR. These tests are effected by the liver’s ability to perform its normal processing and protein producing functions.

@availlant

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54

Does antiviral drugs help in other liver diseases such as those you have mentioned or they are just specific for HBV.
THANKS

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55

Dear @Opa,

In those cases were persons suffer from chronic HBV infection and fatty liver disease for example, the reduction in liver inflammation which accompanies NUC therapy can be beneficial for the patient overall. However, there is no specific effect of NUC therapy on other diseases of the liver.

@availlant

2 Likes
56

Hi @Caraline,

It’s true! :slightly_smiling_face: I definitely need to slow down sometimes and pay attention to my body more often.

I’m still waiting to start treatment. I’ve been very anxious, so I called my Dr Monday morning and left a note for my Dr to call me. I didn’t hear from her, so the next day, I called again and this time I told the offshore receptionist, pls let my Dr know I want to start treatment because I’m concerned about my high viral load. Thursday comes and I still haven’t heard back, the offshore receptionist tells me she hasn’t respond to any of my messages, and she is not in the office on Fridays.

So, I drove to the office and finally spoke to the front desk, and said I left messages for my Dr since Monday, could I just see her for only 2 minutes. They told me she will call me back soon. When I finally got to speak with her, she tells me again that I’m immune tolerant, and don’t need to be on treatment b/c my results are normal. I told her my concerns and that I want to be on treatment.

I was told I have to wait until next Wednesday to pick up Vemlidy because insurance has to approve it. I thought I would be able to pick it the same day.

It was a struggle getting a hold of my doctor. And when you call the office you get an automated message that redirects you to off shore peeps. I really don’t appreciate how things were handled. Is it normal for a doctor to take 4 or more days to return your call?

I made an appointment with a Gastroenterologist but I won’t be able to see him until May of next year…

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57

Wow. That’s not good @Cher1.
I think I recall you said you could find another doctor? If I were you, I would. They don’t seem to be looking after you well. :cry:
May 2025 for the gastrointestinal is a long time to wait as well.
Blessings

58

Sorry to hear about your struggles, @Cher1. If you are looking for another provider as mentioned by @Caraline, it might be worth looking at the hep B foundations provider directory for people who specialise in managing hepatitis B: Physician Directory (U.S. & International) » Hepatitis B Foundation

Cheers,
Thomas

1 Like