Advice on whether to stop taking meds or not

Hi,

I have been living with Heb B for years now. I started treatment about 2 years ago (maybe 3, I’m terrible with dates). Viral load has been undetectable for at least 1 and a half years (maybe 2). Currently taking Tenofovir 300MG.

Attached is the last Profile I had (February this year). I wasn’t asked to do profile again for my current visit (August). Viral load still undetected.

The doctor said I should stop taking the meds and that I should have been told to stop 6 months ago. He said constantly taking it can mess with my kidneys (current test shows my liver and kidney are okay though).

My question is, should I stop taking it ? I’ve read about flair ups when you stop taking the meds. I was told taking the meds was a lifetime thing but now I’ve been asked to stop.

Anyone here with similar circumstances where they were asked to stop taking ?

Hi,

I am not a doctor, but I had exactly your profile while under tenefovir many years ago when my doctor tried to get me off the drug. After just one month following tenefovir secession, HBV DNA became detectable again and my liver enzymes went up, so I was forced to restart tenefovir. With regard to your kidneys, there are simple test to monitor kidney function and switch to another drug if there is a problem. I haven’t had it for 15 years.

Good luck.

Ace

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I am also not a doctor, But given that your surface antigen is still positive, stopping tenofovir under those circumstances is not the standard of care. If you do decide to stop, I agree that flare-ups would be a big concern of mine. Stopping would be especially dangerous if you have significant fibrosis or cirrhosis.

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i am not a doctor but i would say do not stop, you can switch to TAF which is kidney friendly, i think you are on TDF

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Hi @awesomo

I also cannot give medical advice as I am not a physician, but I can give context as to what normally happens when treatment with tenofovir (TAF or TDF) or entecavir is stopped as I am a research scientist involved in HBV drug discovery efforts.

Treatment of HBV with tenofovir or entecavir has a very, very low cure rate after only 2 or 3 years, so the most likely interpretation of your test results is that you still have an ongoing HBV infection but that the drugs are doing a great job at keeping it under control. However, that does not mean that the virus is gone. You are still positive for HBsAg, so you do not meet the clinical definition of a “functional cure” (= no HBV DNA and no HBsAg for 6 months after stopping treatment). The one lab result that is promising for you potentially approaching a cure is that you have some detectable HBs antibodies. It is a bit unusual for there to be detectable HBs antibodies and HBsAg at the same time, but it can occur.

So my interpretation is that your current treatment plan is working exactly as intended and is keeping the virus under very good control, but that there is a very high probability that you still have live HBV in your liver. If that interpretation is correct, and it is consistent with known patterns in HBV infections, then the virus would resurge within a few months of stopping tenofovir treatment.

I urge you to speak with your physician about this as s/he will know your medical condition best.

John

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I had been on Teneoovir from 2018 to Mar 2025. I developed sur antibody late 2024. The doctor didn’t want me to stop, but I insisted. I just had lab tests, still showing HBV DNA not detected. Hope that helps. Tina

Hi @yfnxk0,
Welcome to the community. It depends on how high your surface antibody levels are. Stopping too soon can reactivate the virus and lead to possibly serious liver damage. I encourage you to work with your doctor to determine the best action for your case and care. Best, Bansah1

I’m not completely sure why your doctor thinks you need to stay on it. I have heard of doctors wanting people who already have cirrhosis to stay on the medication forever, even after surface antigen loss and/or development of surface antibodies, but others are allowed to stop after six months of undetectable surface antigen. I don’t know enough about your specific situation to give you advice on this.

Yes, it would be important for these factors and also checking that you are indeed HBsAg-negative (in addition to HBsAb-positive).

Thomas

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