Deciding when to start treatment

Hi everyone,
I’m having Hepb since 2019
Just got done with mandatory 6 monthly tests

LFT is in normal range.
HBV Viral load – 36,345 iu/ml (which has been pretty much same since I first tested)

Confused whether to start treatment or not.
Please help

Hi @kevin ,

Welcome to the forum and thanks for your question. The answer would depend on other tests including HBeAg, anti-HBe, ultrasound, etc. as well as your age and family history. Your specialist will be able to discuss with you whether you are recommended for treatment based on all of these.

Thomas

Thank you @ThomasTu

HbeAg is Non-reactive.
Age 25.
No family history of liver disease.
No other symptoms.

If it is beneficial to start treatment early then why do doctors wait for ALTs or other things to spike up and then advise for treatment?

Need advice , do I need/ or should I start treatment?

also done an ultra sound,here is the finding.

No suspicious liver mass. US-1 Negative. Recommend repeat surveillance US in 6 months. (#US1)

Narrative
ULTRASOUND LIVER

** HISTORY **:
43 years old, hepatitis B. Screening for hepatoma.

** TECHNIQUE **:
Ultrasound images of the right upper quadrant of the abdomen acquired. Color and spectral Doppler images of the main portal vein also obtained.

US visualization score: A. No or minimal limitations.

COMPARISON: None available.

** FINDINGS **:
LIVER: Normal echotexture. Smooth contour. Normal hepatopetal flow in the main portal vein. No suspicious mass.

GALLBLADDER: Present.

BILE DUCTS: Common duct measures 2.4 mm, which is normal. No intrahepatic biliary ductal dilation.

ASCITES: None.

No other family member has liver disease, no other noticeable symptom except having a hard time to sleep.
thank you

That’s an excellent question and the answer is a bit complicated. We know that people at the very beginning of a chronic infection (when they are children) they are not very likely to get liver cancer or liver disease; as you get older and your immune response starts attacking the virus in the liver, you start getting disease.

Doctors need a way to decide when to give antivirals. The current guidelines do not recommend it when you’re very early in the infection because of the following reasons:

  • There is a perception that the antivirals won’t help that much because people in this phase are at low risk.
  • This could be a lifelong treatment, which costs quite a bit of money. Is it worth it?
  • People treated later on when they do have ALT flares have improved health outcomes and don’t progress, so it’s all the same

There is a growing movement that maybe we should be giving patients the choice to be treated earlier if they want to. There is also new data which might suggest that there are early on in the infection that may still contribute to cancer or disease risk.

Assuming your ultrasound/fibroscan is normal, the current European guidelines do not recommend that you be treated. But this is a conversation that you should talk to your doctor about.

@wayyan, you are in a sort of grey area where you can decide to take antivirals or not. Because of your age (>30) you could be considered for antiviral treatment, even though by other measures your hep B is fairly stable (normal ultrasound and normal ALTs). The pros and cons are something you can talk to your doctor about.

Hope this helps,
Thomas

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Thank you very much, Thomas.

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Thank you so much for the help @ThomasTu

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Sir Thimus Which 1 is the best Vired or vemlidy?

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Dear @ajab,

As far as I know, both are as effective as each other. Vemlidy is generally used if you have a problem with Viread (e.g. potential side effect issues).

Thomas

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HI @Ajab, just to further clarify what Thomas wrote. Depending on where you live and what kind of health or prescription drug insurance you have might determine what medication your doctor prescribes: Vemldy or Viread. Since Viread is now “off-patent” and available as a generic drug, it’s cheaper and more readily available. The side effects associated with it can include kidney issues (but this can be easily monitored with blood tests by your doctor) and bone mineral loss (a problem particularly for older women who are more prone to osteoporosis than men. Vemlidy is still a patented drug so it’s more expensive and not available in every country. It doesn’t have the side effects of Viread (kidney and bone loss) and the pill size is much smaller because it’s only 25 mg (something I really appreciate since big pills get stuck in my throat). Vemlidy is known to sometimes elevate a person’s cholesterol and lipid levels, but it’s not common.

OK with all of that said, it’s a decision to make with your health care provider! Cost, access are important issues for everyone, which is why Viread is sometimes chosen over Vemlidy. Keep us posted on what you decide to do. Thanks for sharing your posts with us. Always, Joan

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@Joan_Block

Thank you so much for your valuable advice . let me share with you that in @Pakistan viread is expensive that vemlidy & not available in the Market. But vemlidy is available easley in the Market.

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Then you are in luck!

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Doctor can recommend liver biopsy even your fibro scan, ultrasound is okay … Doctor wants to know the clear picture of liver as se said to me regarding liver biopsy… From last four years my hbv dna is undetected but now he found detected viral load… So we should go with liver biopsy or anyone has better suggestions here. Please​:pray::pray::pray::pray::pray::pray: and please share liver biopsy experience…

Regards
Nisar

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Hi @nisarr,

Thanks for your question. Generally a liver biopsy is recommended if your blood or fibroscan results are unclear about what is happening in your liver. It can be used to see if there is some inflammation or fibrosis occurring.

Hope this helps,
Thomas

Thanks… Indigestion and not gaining weight is main problem I facing regular… Ultrasound is okay fibro scan is on border line… Alt is remain little high always.

Thanks for for valuable advice,
According to you we should go with liver biopsy.

Regards
Nisar Ahmad

This is a decision to be made with your doctor because it is difficult to know what your whole history and context is over the internet.

Thomas

Dear Thomas Tu.
I really appreciate the support you offer in this forum…
I am HBV Chronic patient.
My last Test result 8 months ago was
1- Undetectable viral load.
2-Hbeag Negative
3- Hbsag >1000.
on MRE- Mild liver fibrosis
AFP 12
I experience a chronic fatigue and body itching, the same way I was 8 months ago. I also got memory shortage and do not focus.
The Doctor would not let me start treatment …and tells me I am in monitor stage.
based on your experience, would these confusion, fatigue and memory loss stop if I start treatment?
Anyone with improvement of lower right rib cage pain ? Please share your experience

Hi Eric,

This is just info from my personal experience and coming from a peer; not a medical professional or scientist whatsoever. I just thought I’d share with you what I know of what I have experienced.

1.Chronic fatigue: I think that a lot of people with CHB suffer from fatigue. I think it is one of the most widely experienced symptoms shared amongst us with CHB. I have tried to learn to remember ahead of time that fatigue is a factor in my life. When I forget and I go non-stop all day with physical activity, I know that I will probably be suffering for it for the next day or two. So I try to be careful and not overdo things and try to spread the workload out. The keyword here is, TRY. There are times when I just want to get things done when I feel good enough to do so and then I pay for it later.

  1. Body itching: I believe that body itching is caused by toxins within our body. Our body tries to get rid of toxins and I may not have this exact, but have read this somewhere and it’s close to the following: The body tries to rid the toxins through our urine or feces depending on what was ingested. Some things are filtered by the kidneys but I believe most things are filtered by our liver. If these organs aren’t able to rid our body of the toxins fast enough, then it uses a couple of other means and through our skin is one of those final methods. When the body has to rid toxins through our skin, that causes our skin to itch. For me, a lot of this caused spots that I believe are called liver spots but I don’t believe you will always get liver spots from itching or toxins being released through the skin.

  2. Memory loss, brain fog: If it’s due to liver disease then the condition is called hepatic encephalopathy. Specific medication is needed for this condition that would be ordered by your hepatologist once they have diagnosed you with this condition. I believe however, that you have to be in a pretty advanced stage of CHB in order to have hepatic encephalopathy, so don’t dote on it as the cause until after you speak to your hepatologist about it. I have posted previously about my experience with brain damage and major memory loss after STARTING antivirals for the first time. But I have been told over and over that this is not very prevalent at all. I had many bad reactions to treatment and still live with a lot of conditions since then, so again, my experience is very rare and I would guess that the huge majority of people on treatment don’t have much or extreme issues, if any at all.

Again, please remember, I am a patient just like you. I have no expertise and I am just sharing from my own personal experiential knowledge. Thomas will reply but may also give a shout out to the medical professionals within this community and I hope they will pitch in on this post and correct anything I got wrong.

Wishing you well,

Paul

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Dear @Wadani1,

Thanks for your question. It’s important to know that everyone experiences this disease differently. I, for example, do not feel any obvious effects from my infection, whereas @PuallyHBV has felt many symptoms. To some extent this is because he has progressed further with his liver disease (up to cirrhosis), which comes with many issues that he has listed there.

To be honest, with your low levels of fibrosis and very low levels of viral load, HBV wouldn’t be a likely cause for the symptoms you suggest and it might be worthwhile first looking at other potential causes.

Regarding treatment, I’m not sure it would do anything because your levels are already so low that they are undetectable. There is no virus replication for the drugs to stop, so this wouldn’t change anything.

Of course, things may have changed in the last 8 months and you should monitor with blood tests every 3-6 months.

Hope this helps,
Thomas

@PuallyHBV did a very nice summary of his situation living with hep b, which is the experience of many, but of course not all people. As Thomas mentioned, he doesn’t suffer from many physical manifestations of this liver disease. When I was young like he currently is, I didn’t suffer much either, not even from fatigue. But as I’ve aged, fatigue is a bigger issue. I completely agree with Paul about pacing myself to not overdo it. I never know when the fatigue will hit me like a truck, though, so I try to make sure I’m as productive as possible on my good days. And yes, fatigue is the number 1 issue that patients talk about as per a survey the Hepatitis B Foundation did last year where more than 2,000 people responded. And it makes sense - the liver is the engine of our body.

As far as itching (or pruritus, the medical term), Paul is right about the theory that the liver can’t always eliminate the toxins from our body, so the toxins can accumulate in our blood stream and cause itching. A good article about Living with HBV and “itchy skin” can be read on the Hepatitis B Foundation’s blog. And regarding “liver spots” or “age spots,” they are not due to any liver disease or hep b. They are the result of damage to the skin from cumulative sun exposure, which is why they tend to appear on one’s hands, forearms, face, etc.

Finally, “brain fog” again is something that I’ve only really suffered from since menopause. So I can’t be sure it’s from hep b or natural aging? But I know it’s something that I’ve heard many patients talk about!

Thanks again to all of you for sharing your thoughts and experiences. Very helpful! Always, Joan

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