When to discontinue chronic hep b treatment

General Discussion
#1

For majority of people on hep b treatment, we are frequently faced with the question of when to stop treatment once it has been initiated. There are many possibilities brought about by treatment; functional cure, contraindications, permanent cure, HCC, kidney problems etc.
In our consultation sessions, we also meet physicians belonging to different schools of thought. Others are very ignorant on matters hep b.(a physician once told me, your condition is very complicated.) Another one wanted to stop my treatment based on Hep DNA results (undetectable). There are those who also argue that ones treatment has been initiated, it’s lifetime- nothing less nothing more.
There are clear guidelines (from different bodies) on when to initiate therapy, but little on when and how to stop,if any. Such a discussion in this forum will go along way in protecting us against many pitfalls.

Regards
Kinoti.

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#2

Dear Kinoti, I agree that there’s a lot of confusion out there among patients like us and health care providers themselves as to when to stop treatment! I know that Thomas will know the studies that wrestle with this question, but for me, I have decided that it’s ok to keep taking one pill a day. It’s very little so it’s easy to swallow; it doesn’t cause any side effects; and, so many folks my age at 62 years are taking a lot of pills to control other conditions that (fortunately) I don’t suffer from - type 2 diabetes, hypertension, heart disease, etc. Until there is even a “functional cure,” I plan to stay on my antiviral and not risk an acute liver condition by stopping it. But I agree that more discussion on when to stop would be good to decrease the confusion and anxiety folks may have from the conflicting information out there. The good news is that many researchers I know talk about how within the next 5-10 years there will be something better than what we currently have. That would be wonderful! Always, Joan

#3

Yes, this is a very interesting question at the moment in the field. Many doctors are wondering the same thing and have done a few small studies. When you stop antiviral medications, several things can happen:

  1. The virus comes back after a while, usually with some raised ALTs
  2. The virus comes back quickly and is accompanied by very high ALTs and severe liver damage (sometimes even liver failure)
  3. Your immune response takes over and keeps the virus suppressed at low or undetectable levels, but still with HBsAg
  4. Your immune system is very successful, raises some ALTs, but eventually you lose HBs

We are still working out how to predict who goes into which group. If we know that ahead of time, then we can feel more confident about who to stop and who to keep on the drugs. As we do more research, we should be able to form better rules about stopping treatment (e.g. based on different lab test values).

TT

1 Like
#4

Dear Joan Block
I cannot agree with you more when you say you are ok with a pill per day. It doesn’t hurt but goes along way to keep one safe.
Regards
Kinoti

#5

Hi anyone, I joined the community a few months ago and this is my first post because English is my second language and also I’m not a good writer. I hope anyone is doing well during the pandemic time.
I had the the same experience with Kinoti. When I was diagnosed with chronic Hep B about 2.5 years ago, my primary doctor told me that I should get the treatment until ast, alt is down and virus is clear then stop. Then, when I saw my GI doctor, he gave me the treatment and I asked him for how long do I have to take the medicine and he said that I have to take it for life.
Two months ago, I saw my primary doctor for annual check up and based on blood work report on 08/2021 (my AST - 20, ALT - 20, virus DNA not detected and liver ultrasound was good) he asked me if my GI doctor said how long more that I have to take the medicine and he thought I’m able to stop taking medicine. I’m planning to ask my GI doctor again when I see him next follow up to see what he will say.
Yes, each physician has different school of thought and I make me wonder if anyone in this community had actual stoped the treatment and what was the result?

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#6

Hi anyone, My doctors told once you start to take medicine, it is lifetime. if you stop the medicine, the virus DNA coming back. another relatedly question is if I can reduce the dose. Right now, I take Vemdily 25mg every day since 2017, the virus DNA not detected. All liver functions are normal. I am wondering if I can take a half of dose daily. I am worried about the side effect on kidney for long time

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#7

Dear @Dauphin50 and @bz1992uk,

Please discuss with your doctor before any changes to your medication (stopping or reduction) as it can be very dangerous to your liver health.

Thomas

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#8

After 48 weeks of treatment, my general doctor discontinued my treatment. When I went back to him one year later he argued I was ok and should move on. I worked around for a referral which I got from a “clinic officer”.My visit to a gastroenterologist was very shocking. I had a relapse with severe fibrosis.
Last September another general doctor requested me to stop treatment based on my normal ALT and undetected DNA. I objected and I am on treatment on my own voluntary until I manage to see a gastroenterologist again.
For me, in my country it’s complicated to treat Hep b and one needs to be very informed, otherwise our doctors are capable of doing a good mess.

Regards
Kinoti

1 Like
#9

Hi @bz1992uk

Majority of people on any kind of treatment are earger to stop treatment. Stopping treatment gives a temporal relive of getting off the task of taking medication and soathes one against imagination of possible side effects.
So, @bz1992uk, your feeling is normal but you should also be worried about the outcome of stopping or reducing dosage as you are worried about the side effects of vemlidy. @Thomas advises you to seek candid discussion with your doctor before you can stop or even adjust your daily dose. I agree with him totally. But if I were in your shoes, I would not rely on the counsel of only one doc but go for a second opinion before tamparing with the treatment.
Regards
Kinoti

#10

I agree with Kinoti’s advice and insight. And yes, please read Thomas Tu’s posting from 6 days ago again. Very important to not stop hep b antivirals suddenly, I’m reposting Thomas’s message below so folks can read what he wrote:

From Thomas Tu: Yes, this is a very interesting question at the moment in the field. Many doctors are wondering the same thing and have done a few small studies. When you stop antiviral medications, several things can happen:

  1. The virus comes back after a while, usually with some raised ALTs
  2. The virus comes back quickly and is accompanied by very high ALTs and severe liver damage (sometimes even liver failure)
  3. Your immune response takes over and keeps the virus suppressed at low or undetectable levels, but still with HBsAg
  4. Your immune system is very successful, raises some ALTs, but eventually you lose HBs

We are still working out how to predict who goes into which group. If we know that ahead of time, then we can feel more confident about who to stop and who to keep on the drugs. As we do more research, we should be able to form better rules about stopping treatment (e.g. based on different lab test values).

TT

1 Like
#11

Hi Joan

Anybody familiar with @Thomas approach to issues can read between the lines of the extract you have quoted and get answers to “when to stop medication” which Thomas puts in an indirect way(can I call in a parable?) So folks if you do dare, weigh the risk and take it if you don’t mind the outcome… period.The consequences will be yours t bear. :grin: :notes:
Regards
Kinoti