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.
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
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:
The virus comes back after a while, usually with some raised ALTs
The virus comes back quickly and is accompanied by very high ALTs and severe liver damage (sometimes even liver failure)
Your immune response takes over and keeps the virus suppressed at low or undetectable levels, but still with HBsAg
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).
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
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?
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
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.
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
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:
The virus comes back after a while, usually with some raised ALTs
The virus comes back quickly and is accompanied by very high ALTs and severe liver damage (sometimes even liver failure)
Your immune response takes over and keeps the virus suppressed at low or undetectable levels, but still with HBsAg
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).
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.
Regards
Kinoti
Hello, I started taking vemlidy when it first came out. I used to take 25 mg but after a year later, I asked my doctor if I can cut the pill in half. I 'm 4 feet 10 and weigh 85 pounds so I thought I could take half a pill and be ok. I’ve been cutting my pill 25 mg into half so now I have been taking 12.5 mg for several years. No side effect and it’s been working for me thus far.
Hello All,
I’ve been on antiviral for 18 years now. Starting with lamivudine, hepsera, adefovir, viread, vemlidy. Undetectable dna with low alt,ast no issues for the last 18 years. Switched the meds not because resistance but just thought to switch to a more effective drugs according to the doctor I have been seeing. My dad died of liver cancer in his 50’s because he was unaware of his condition and never got the proper treatment and was on a typical normal diet. In the past 2 years, I’ve been on a plant based diet. I’ve heard that according to the “China Study” by Dr. Campbell, he found high liver diseases among the kids who consumed animal protein in Phillippine in the 70’s. So, I stopped eating meat and began consuming much more plants. I feel relatively healthy now.
Another reason why I began a plant based diet is to reduce my cholesterol from 250 to 170 just over 6 months with diet alone. I was never obese but my diet used to be american standard normal to bad. I don’t know why I had high cholesterol because I never consumed dairy that much or even the meats prior to going plant based only. I was still kind of thin like 90 pounds but my inside must have been pretty bad. I once also posted here in the past if vemlidy contributed to my high cholesterol level…My husband eats more meat and dairy but his cholesterol is lower than mine. It could be that his base cholesterol level might be lower than mine given our body type. Not sure.
Given all these conditions, I feel uncomfortable to take vemlidy 12.5 mg that I take on a daily basis.( I’m 4 feet 10 and weigh 85 pounds so I began cutting 25 mg pill in half after a year of starting vemlidy.) I was told that I have to be on antiviral for life. I am a genotype C, Asian descent, probably contracted hbv as a child, 54 years now, female. Probably not a good idea to stop the antiviral. However, I wonder if I should try…
Is there anyone out there who has similar condition as me who has stopped antiviral treatment and managed to be ok?
I know Thomas listed 4 different outcomes if antiviral is stopped. I just wanted to see if I can manage to be ok stopping the antiviral until the flare occurs.
Most important question. If one stops antiviral treatment and relapse occurs, can one go back to antiviral and would that treatment be just as effective as before or would it not work as well?
Sorry for the long post and would highly appreciate any feedback and experiences you’v had with stopping antiviral.
Hi catcher. 007
You’re relatively older than me being 48years African make.
I stopped taking ARVs for around three years of which for two years i was ok. However, the third year I had a severe relapse which graduated very fast. I got severe fibrosis. But, going back to treatment, the response was just ok.
Kinoti.
I would strongly advise you not to stop taking your medications and not to reduce the dosage prescribed by your doctor. As @Kinoti mentioned, it can be very risky for your liver health if not properly monitored. You may not feel the symptoms of a bad flare until it is too late and your liver is severely injured.
I know. I would discuss with my doctor if I were to hold my treatment. He already knows that I cut my pills. I was just wondering if there are others out there who stopped the treatment for a prolonged time before going back to the antiviral meds again. The purpose of the aim would be to give the liver some time off the medication.
I know that all this discussion about discontinuation of antiviral therapy has me quite concerned and I suspect Thomas as well.
As Joan very rightly put it, taking a pill once a day is a small burden and keeps you safe from your chronic HBV infection.
Lets get some facts out plainly on this thread for the benefit of everyone.
HBV DNA undetectable and normal ALT are NOT ACCEPTABLE OR SAFE conditions for stopping therapy with any NUC, this includes the following:
lamivudine (aka 3TC / Epivir)
adefovir dipivoxil (aka ADV, Perveon, Hepsera)
entecavir (aka ETV, Barraclude)
tenofovir disoproxil fumarate (aka TDF, Viread)
tenofovir alafenamide (aka TAF, Vemlidy)
The only acceptable criteria for stopping NUC therapy is the clearance of HBsAg (a “negative” result by a qualitative assay or < 0.05 IU/mL by a quantitative assay). This should be preferably established with at least one repeat measurement spaced three months apart. This is the current guideline for stopping NUC therapy in North America and Europe. If your physician thinks it is ok to stop your NUC therapy without establishing these clear criteria, I strongly recommend you find another physician (preferably a gastroenterologist / hepatologist).
There are some clinical studies where the withdrawal of NUC therapy has been attempted with “low HBsAg” but it is important to note that this clinical activity is being performed under frequent and intense monitoring by expert hepatologists The results of these studies have not been conclusive and should not be used by patients or physicians to guide treatment with NUCs.
The only instance where NUC dose modification is indicated is for ETV and TDF in the case of impaired kidney function (measured by elevated creatinine levels in the blood / reduced creatinine clearace rate). For ETV this is reduction of the daily dose and for TDF this is switching the dosing regimen from 300mg daily to 300mg every other day. There is no current dose reduction indicated for 3TC, ADV or TAF. Dose alteration of ETV and TDF should only done under the supervision of a qualified physician and should not be done for other NUCs including TAF.
The danger with stopping NUC therapy inappropriately or altering NUC dosing on an adhoc basis is very real and significant. Reactivation of active HBV infection can occur quite rapidly and can lead to a fulminant hepatitis where liver function decompensates very rapidly. You may feel fine during the early stages of this dangerous event and come to see your doctor only after significant liver damage has occurred which may be difficult to reverse, even with resumption of NUC therapy.
A lot of time and hard work by 1000’s of researchers and physicians has gone into carefully creating treatment guidelines for your benefit, please follow these guidelines!
I agree with Andrew’s points here and just wanted to add on another to address the issue brought up.
There is no evidence that the antiviral medications put stress on the liver or that the liver needs a break from the medications. Doctors regularly have to put people with cirrhosis and suboptimal liver capacity on antivirals all the time (indeed, it is part of the recommended guidelines). In these cases, antivirals save people’s livers and lives.
Hi catcher 007
My fibrosis was very bad, on the borderline to cirhhosis. It taught me the biggest lesson of my life…
Remember,the ARVs we take are broken in the kidneys and not the liver
Kinoti
