Hi, I am 35 years old and was first diagnosed with Hepatitis B in 2004 through HbsAg. The PCR test was Negative then with normal LFTs (30-35 ALT and AST). In 2012, HbsAg was +ve, HBV DNA was “UnDetected”, HbeAg was -ve and HbeAb was +ve. LFTs remained normal as well (around 30). In Nov 2013, my HBV DNA turned out to be Positive and quantitative HBV DNA showed 4,100 copies per ml while LFTs were normal (25-30). My doctor prescribed me “Entecavir”, however, I consulted with an other doctor and he recommended not to start treatment. So, I did not start treatment. In May 2014, my HBV DNA showed 980 copies/ml. However, in October 2014, HBV DNA showed 51,000 copies/ml, LFTs were normal (25) and AFP was 11.7 IU/ml and quantitative HbsAg was 393 IU/ml. I then started taking Entecavir oral daily. In Oct 2017, quantitative HbsAg was 452 IU/ml, LFTs were normal (15-20) and HBV DNA “UnDetected”. From 2014-2021, my HBV PCR remained undetected and ALT usually remained around 15. In July 2021, I tested again and HBV DNA was “UnDetected” and LFTs were normal (ALT 13, AST 15) and I stopped taking Entecavir. After 6 months off treatment, I again tested in January December 2021 and my LFTs were normal (ALT 10, AST 14) but HBV DNA turned out to be positive. I again did quantitative HBV DNA and it showed 1840 IU/ml. Also, I got quantitative HbsAg which turned out to be 63 IU/ml.
I am now slightly seeing pressure and pain in my upper right quadrant, supposedly in liver. Please guide me if I should re-start treatment with Entecavir as the virus after years of suppression to undetected level with treatment has now started replicating again and reached to nearly 2000 IU level. What are pros and cons of starting re-treatment with Entecavir? What are pros and cons for continuing without treatment?
Hi chronichepb
Sorry for your current experience and your state of not knowing what to do. Morever, now that you have joined the right forum you will be able to walk with us in your journey to the peace of your heart.
Feel at home in our community.
Regards
Kinoti
Hi chronic Hepb
As you wait for feedback from members, I can advise you to continue medication as it is inappropriate to keep starting and stopping treatment as this leads to drug resistance.
I formed a topic on when to stop treatment and I can tell you stopping once you have started is a tricky affair. Hope you search the topic to enlighten yourself one the discussion.
Regards
Kinoti
Hi, thanks for your kind advise. My problem is that I had already stopped the treatment after July 2021 and now I am looking for advise on whether to re-start or not as my HBV DNA is again detected. I have provided details in my original message. Thanks.
Please start treatment even as you wait for any input.
In the first instance, your stoppage of treatment was u procedural.
I once stopped treatment after a period of undetectable viral load and what followed was a serious relapse with very high viral load and boarder line liver scarring
Kinoti
Welcome to the community and thanks for sharing your story, @chronichbv. I do want to start by saying that you should follow the advice of your health care professional. I am not a clinical doctor, so I am not trained to provide medical advice.
However, I want to advise you that you should not stop your medication without first consulting your doctor. Generally, people on antiviral therapy, like entecavir, will keep taking it as long as their HBsAg is positive (which can be over years to decades).
Health-wise, there are few cons to restarting entecavir. If you were taking it and it did not give you any side-effects, then you should be fine.
There are, however, risks to not taking entecavir. Your liver can be damaged (possibly severely) if you are already having pain indicative of liver flares.
Hi.
Would definitely work with your doctor on treatment decisions. It is very common for HBV DNA to rebound once entecavir is stopped. Many guidelines suggest that antiviral treatment should never be stopped in people with HBeAg negative chronic hepatitis B unless HBsAg becomes negative. However there is a lot of research occurring at the moment about who may be able to safely stop treatment and a big predictor is low HBsAg level - yours is now quite low so it may be that you will be able to stop in the future if it continues to fall.
It is unlikely that you are getting liver pain from a flare if your ALT level is only 10. However if it persists you should discuss with your doctor and perhaps have a liver ultrasound to check it out.
Entecavir is a very safe drug to continue longterm.
Hi Chronichbv,
First, it is risky for you to stop antiviral treatment by yourself. Once I had met some HBV patients that they stopped antiviral treatment and they suffered liver failure. So it is very dangerous to stop oral antiviral treatment without the doctor’s advice. It is better for you to listen to your doctors.
Then I think now it is good for you to test Fibroscan, liver function, ultrasound in liver and HBV DNA, HBsAg, HBeAg, HBeAb, HBcAb.
For patients with positive serum HBV DNA and normal ALT, if one of the following conditions occurs, the risk of disease progression is high, and antiviral therapy is recommended: ① Liver histology shows obvious liver inflammation (≥G2) or fibrosis (≥S2); ② ALT continues to be normal (checked every 3 months for 12 months), but there is a family history of liver cirrhosis/hepatocellular carcinoma and age > 30 years; ③ ALT continues to be normal (checked every 3 months for 12 months) , no family history of liver cirrhosis/hepatocellular carcinoma but age > 30 years old, non-invasive diagnostic techniques for liver fibrosis or liver histological examination are recommended, there is obvious liver inflammation or fibrosis; ④ There are HBV-related extrahepatic manifestations (glomerulonephritis, vasculitis, polyarteritis nodosa, peripheral neuropathy, etc.).
After that, If your HBsAg is low, maybe you have chance to use PegIFN to clear the HBV virus.
Wish it can help you.
Thank you so much for your detailed answer. I recently had HBV DNA, qHbsAg, and LFTs done a couple of weeks ago which I shared in my post. Unfortunately, I am unable to get any additional tests done for the next few months due to some limitations as I am not in my home country currently. Seeing all comments from experts and reading literature, I have decided to re-start treatment with Entecavir yesterday. I had only two options for now: continue without treatment, or re-start treatment with Entecavir. So I picked the later option considering this to be a better choice. I don’t know what implications this decision may have. Happy to hear on this front. Also, if someone can give some dietary suggestions that would be great. Thanks again.
Hi chronichbv,
I want to ask a question, are you stopping treatment as a medical advice from a provider or as a personal decision? I think it is dangerous to be doing the stop and start with your hep. B medication. I am a co-host of “B Heppy” podcast (we talk about all things concerning hepatitis B) and we have an episode on this issue. We talked to someone who was in the same situation and he is lucky to be alive today to share his experience. He nearly died. He will start treatment and will be told to stop. When things start creeping back up, he will start treatment again. This went on for a while, but finally imaging showed he has caused serious damage to his liver and needed a transplant urgently. That episode should be coming out soon and I hope you can listen to it. It is an interesting conversation that I think could be helpful. I am glad you are back on your medication. Please work with a provider in making such decisions if that is not the case already. Stay well and safe. Bright.
Hi, thanks for your comment. I actually travelled abroad and forgot to take medicines with me. Since I had undetected HBV and normal LFTs before that, I considered giving up the treatment. So, as soon as I returned, I got my tests again and it was reactivated. So, I shared my case here. Now, I have restarted treatment and I really hope that this will go well and I will not stop treatment again until a functional cure is achieved. Please do share your podcast’s link when it is released, it would be great listening to that.
I was in the same shoes as you a couple of months ago. I had business trip to Ukraine with only a three month duration of the drugs with me(in China where I am from, doctors are only allowed to prescribe a three month drugs max). But Entecavir I am on is made by an American company called Bristol Myers and available in Ukraine as well. And I assume it should be also available in many countries for patients without the need of producing a prescription when buying it.