Back in January, my doctor told me that I had finally achieved a functional cure for hepatitis B. I’ve been on antiviral treatment since 2009, starting with entecavir, which we stopped in 2012, but the HBV DNA returned. I restarted treatment with tenofovir in late 2013 and stayed on it until this January.
All my recent test results have been within the normal range: liver panel (Alb, ALT, ALP, AST, Tbil, AFP, HBsAg), QsAg is nonreactive, and my renal panel is also normal. Based on this, my doctor decided I could stop the medication.
It’s been three months since I stopped, and my labs still look good. However, I’ve been feeling more restless and have noticed a drop in stamina. Despite maintaining the same routine and diet, I find it harder to go on long runs like I used to. I’m wondering if this could be a side effect of stopping long-term medication.
Has anyone else experienced something similar, feeling more fatigued or losing stamina after stopping treatment, even with normal test results?
I’m not a doctor but have lived experience of HBV. 40 years +
I personally wouldn’t go off my treatment because of the risk of reactivating damage to the liver.
I’ve had no side affects from the medication and see no positive reasons of stopping it.
The other negative I’ve heard is drug resistance if the virus becomes reactive.
I’m glad you have reached out to us.
More professional experts will be able to help with your questions soon.
Thank you so much for your response and for sharing your experience, I truly appreciate it.
At first, I was hesitant to stop taking the medication because I had gotten used to it. Taking it daily never felt like a burden. But eventually, I did stop. Initially, I didn’t notice any side effects. But over time, I started feeling constantly fatigued, even though nothing else in my life had changed. My diet’s the same, my routine’s the same, I drink enough water, and I’ve been exercising regularly for years. That’s what worries me. I’ve read that the body needs time to readjust after stopping tenofovir since it’s such a strong drug. But I just don’t like how I’ve been feeling lately.
I’m really curious, has anyone else experienced something similar? Would you mind to share your opinion @john.tavis@Bansah1@ThomasTu ?
Hi @0r394n0,
Sorry to hear that you are having some issues. I am not aware of anyone having any experience with their antiviral after halting treatment. May I ask, after how many tests, before your doctor asked you to stop the treatment (how many nonreactive surface antigen results)? If it were based on a single test result, then that is not enough based on the guidelines.
Do you feel like you are losing interest in doing anything? How is your sleep and appetite? Do you feel blue? I am wondering if what you’re feeling could be depressive symptoms rather done from stopping the antiviral.
We have a few people on here who have reached functional cure status and do not have the symptoms you describe. You might want to discuss these symptoms further with your doctor to look deeper into this. I hope you feel better soon and can get to the bottom of this.
Thanks, Bansah1
Hi,
I am not a doctor but as far as my knowledge, you should never stop this drug.
Main question here is, “how do you know you have achieved functional cure?”
OR “how your doctor knows you have achieved functional cure?”
It is OK to stop taking anti-HBV medications after achieving a functional cure. Once you’ve reached that state, there is no more replication-competent virus in your liver, or if it is still a trace of it, your immune system has it firmly under control (that is the case for many people following clearance of an acute infection).
The problem is figuring out when you have a functional cure. The definition says it is being HBs and HBV DNA negative in blood six months off treatment, so you cannot define a functional cure while on treatment. There is no clear consensus yet among the medical community about how long after after your DNA and HBs drop to undetectable before you can safely come off treatment.
There is no great likelihood of developing resistance from a single treatment interruption (for example, stopping the drugs and having HBV DNA come back a few months later); the problem comes from repeated interruptions and inconsistent use of the drugs. Also, resistance to tenofovir (TDF or TAF) is extraordinarily rare.
I recommend continuing to monitor your HBs and HBV DNA levels, perhaps a bit more frequently than the normal 6 months if your insurance permits, so you can catch rising HBV levels quickly if they do start to come up.
As to your fatigue–I’ve never heard of that from coming off the HBV drugs, but I am not a physician so I could be wrong.
Regardless, your negative lab values are a good thing for you, and I hope your exhaustion fades soon.
How did you know it came back because when you have a true functional cure you develop an antibody for it with no surface antigen an no viral load. That’s a real functional cure. Unless your doctor is wrong about his situation with you. I’ve seen doctors tell people to stop antivirals because of no viral detectable an say you don’t need treatment anymore. Can you post your results? There I think it would give better clues.
Thanks for your question and congratulations on your functional cure.
Indeed, it is difficult to know as the research on people who have cleared hepatitis B is relatively limited (as they typically stop going to the doctor to be monitored).
If you have any doubts, please go to see your doctor. There may be other causes for such fatigue.
I have actually been undetectable for HBV since 2015, which means it’s been almost a decade now. I did bring up my concern about the possibility of the virus returning, especially since it happened once before with my first treatment. However, my doctor reassured me that since I’ve been undetectable for such a long time, it is unlikely to return, though there is still a chance under certain circumstances.
I also don’t believe my symptoms are related to my mental health, as I have received treatment for that as well. However, what I found troubling is that these symptoms feel strange and unfamiliar, something I have not experienced in years. Yet, I do remember feeling this way when I was first diagnosed with hepatitis B. Hence, I felt really worried
Bonjour, je suis sous entecavir depuis 6 ans ma charge virale est indetectable depuis 6 ans mais mon hbs est de 50 000 soit 4,7 log donc je pense que je ne pourrais jamais arreter les antiviraux car l’antigene hbs ne baisse pas sous antiviraux. A combien etait votre niveau antigene hbs quand vous avez arrêté votre traitement ? Par ailleus j’ai développé une fybromialgie secondaire à mon hepatite b chronique. Merci.
Hi @0r394n0,
I appreciate your response. I asked about how many tests were conducted before removing the antiviral. I believe to be considered as having a functional cure, ALT/AST normal, a loss of surface antigen, undetectable viral load, and normal liver imaging. I am unsure since you only mentioned having been undetectable since 2015 whether all the other results were considered. Having undetectable status should not be the only result used to remove treatment. And these results must be confirmed by multiple blood work and should not be based on a single test results.
I asked about the depressive symptoms because sometimes people can feel depressed without being aware of it. But I am glad to hear you did get help for it.
If you are still feeling this way, please seek medical help. The stopping of antiviral treatment should not be causing you to feel that way. Please see your doctor and let them know about your symptoms.
Thanks, Bansah1
Je me demande pourquoi mon niveau d’antigene HBS est aussi élevé ?
Dans les futurs traitements les niveaux d’antigene HBS doivent etre bas pour en bénéficier, je ne pourrais donc beneficier d’aucun traitement à venir?
Par ailleurs j’ai déclenché une fibromialgie secondaire à mon hepatite b. Est ce que vous avez deja entendu parler de cela ?
J’ai lu dans un article que 30% des hepatant chronique avaient une fibromyalgie.
Thank you so much for your responses, especially @john.tavis@ThomasTu@Eddie@Suresh786, @Bansah1, and @Caraline. I genuinely appreciate the insights you have shared, I have learned a lot, especially about how the concept of a functional cure for hepatitis B is still being debated.
I must admit, I was quite surprised when my doctor told me I had reached a functional cure. Initially, I was not even familiar with the term. I always believed that having hepatitis B meant living with it for life, even if it remained undetected.
For your reference, I have attached the letter from my doctor. My doctor is a highly trained specialist in gastroenterology and hepatology, she also warned me that there is a risk of liver cancer despire functional cure.
Thank you once again for your support and valuable insights
dear
from letter, it seems your doctor has very good knowledge, before i had doubts but after looking at letter, it seems your doctor knows what he is doing, in letter he is mentioning loss of HBsAg if that is the case then yes you have functional cure in my opinion (i am NOT a doctor)
This seems you do have a functional cure. Just Live healthy as possible, and you should be good for the rest your life. I my self just had functional cure also. With no meds. Anyone reading this it is possible for you. good luck to everybody on this platform on this journey
Regarding HBsAg levels, this is a good question. The antivirals that are used (entecavir, tenofovir, etc.) only target virus replication, which is the ability for the virus to make more of itself. Virus expression (the ability to make virus proteins) is not affected. So there is no expectation that antiviral therapy will affect HBsAg levels.
The most advanced therapies do require lower HBsAg levels to be effective, but there is a hope that research will develop new approaches so that everyone can benefit and have the chance for a cure.
Regarding fibromyalgia, it is not well researched. Yes, there are a few articles about this (some saying 30%), but these studies investigate a very small number of patients and appear to be coming only from a single region. I have not seen bigger studies showing this association, nor has it been well documented in other countries.
I apologise that I cannot respond to you in French, but hopefully this is helpful. I do encourage our native French speakers to help out with any further question or just to have some friendly communication in your mother tongue (@marion.heriveau@mariondelphin@e.verrier@julie.lucifora@Gilbert@Alex1313).
This is fantastic @Eddie! Congratulations, I’m so happy for you!
because when you have a true functional cure you develop an antibody for it with no surface antigen an no viral load. That’s a real functional cure. Unless your doctor is wrong about his situation with you. I’ve seen doctors tell people to stop antivirals because of no viral detectable an say you don’t need treatment anymore. Can you post your results? There I think it would give better clues.
