I was recently diagnosed with Chronic Hep B and the gastroenterologist suggested that I begin Vemlidy. He said that all of my kidney bloodwork came out great, my viral load is around 3,900, and my liver looks healthy on the ultrasound. The only reason why he wants me to start treatment is because my mom got HCC. My medication will arrive in a few days and I’m really nervous about starting, because once I start there is no going back. I feel worried and hesitant because of the many potential complications that could come up. Like…What if I’m fine without the medication and just keep monitoring it? What if I lose access to medication or insurance, and have to stop suddenly? I can only get my medication for 30 days at a time, well what if there’s an issue getting my medication? What if my things get stolen?
It’s all so new and I am feeling overwhelmed, so if anyone has any word of advice or reassurance, please send it my way, I’d be so grateful for the support. Thank you so much
Edit to add: I am 34 YO living in the United States
I hope you are doing well . From your concern, according to AASLD guidelines 2025 for HBV management with consideration of antiviral therapy in CHB HBeAg -ve patients with HBV DNA >= 2,000 IU/ml and ALT < 2x ULN which is considered in indeterminate phase requires a shared decision making between physician and patient taking into account the long term benefits and risks to happen.
In your case, the Gastroenterologist suggested you to start Vemlidy due to your family of HCC in mom that means you may have risk of HCCin long term in case that you don’t start treatment. The mechanisms of HCC development mostly depend on the amount of virus, especially if HBV DNA >= 2,000 IU/ml because it will cause the chances of HBV DNA integration in nucleus of hepatocytes and it also makes necroinflammatory processes and repair in liver tissues with fibrosis and cirrhosis along with clonal expansion of hepatocytes even though ALT values are within normal limits but histology from liver tissue may show significant inflammation and fibrosis leading to genome instability and carcinogenesis in the long term.
Chronic HBV infection is a complex, complicated and dynamic disease whose future is difficult to predict. If you are still hesitant to start taking antiviral therapy despite indications, you must monitor your HBV DNA , ALT periodically and still have to wait and see what the laboratory results will be , causing anxiety and poor quality of life. Currently, antiviral drugs especially Vemlidy (TAF) has very few side effects, no drug resistance in long term use if taken regularly.
You are fortunate to be living in an era where there are effective antiviral drugs compared to to the past 30 years ago, at that time there was only interferon@2b for treatment of chronic HBV infection and the response cure rate approximately 10% with many adverse drug events.If you have problems about access or insurance to Vemlidy, you can switch to use other antiviral drugs such as Entecavir or TDF which have lower costs and you should monitor for side effects that may occur.
In my opinion, I agree with your doctor to start Vemlidy due to your family history of HCC in mom , further more, your HBV DNA >=2,000 (3,900 IU/ml) which means that you are not in HBeAg - ve inactive carrier phase that need not to be treated. When considering about risk and benefit in your case, taking antiviral medication is more beneficial and cost effective in the long term to suppress viral replication for preventing cirrhosis, liver cancer and improve your quality of life eventually. I hope this may help you in decision making.
Hi @turtleshell,
Your concerns are valid, and we hear you. It can be scary. I was in your position about 10 years ago, and I look back and still believe I made the right decision to start treatment. To avoid interruptions, it is recommended to obtain refills a few days in advance and notify your doctor immediately if you encounter any challenges. Do not be afraid to try different pharmacies. I had to switch pharmacies because they were always behind on ordering my refills. This was not the case initially. But I noticed staff shortages at this pharmacy and a decline in customer service. I switched to an outpatient pharmacy associated with my hepatologist, and it has been fantastic.
I agree with @chul_chan. Given your family’s history with HCC, starting treatment now makes sense. There is no point waiting. Your doctor is making the right recommendation here.
Please check this link, which contains discussions on this subject, and I hope you find it helpful. Please keep us posted. Bansah1
Wonder if hospital pharmacies tend to be more reliable in terms of quality of medication and service than retail ones? For instance, would retail pharmacies give you cheaper and lower quality generics instead of what your doctor prescribes? And according to chatgpt, hospital pharmacies have different procedures and policies in place to prevent errors. Thanks.
Not, really. It’s the same medicine. The only difference is I am able to get my refills a week or two ahead before it’s due. Additionally, it’s shipped directly to me which is a plus. I have never had the refill issues I had with the other pharmacy since I made the switch.
The antiviral will contain the exact same ingredients even if they come from different pharmacies and manufacturers.
Best, Bansah1
I was in your shoes a month ago. I started my treatment with similiar concerns. My DNA load was 4,400 with ALT in normal range. I have been exercising everyday, playing badminton three times a week and swimming on the days that I don’t have badminton games. So, I don’t feel it was necessary and my doctor agreed to monitor for another six months. I thought about it, and decided to start as the guideline suggests. Otherwise, I am taking the risk of virus duplicating quickly and causing damage to my liver. I know it may or may not happen, but it makes me worried. Upon starting the treatment, I had some discomfort during the first few weeks, now side effects are almost gone. I have less worries about my liver.
I am not a doctor. I disagree with your notion that once you start on an antiviral, there is no going back. There are many examples of patients stopping their antiviral treatments and remaining inactive. HBV is a highly variable disease. Yes, it may have to stay on antiviral for a very long time, you may successfully stop antiviral without your HBV progressing, or you may be functionally cured by antiviral treatment.
I am not a doctor, but I am a patient on treatment for HBV, and I work in the health insurance industry in the US. I would personally say that it would be best to try one of the generic options for treatment (entecavir or TDF), unless you have contraindications that would require you to use Vemlidy, just because they are so much cheaper. Insurance will usually give you less of a hard time about filling prescriptions for generic drugs, but even if they refuse to fill it, there are several options to get both TDF and entecavir for a reasonable price without insurance. I am able to get mine with a 90 day supply, and I am able to get the next fill 1-2 weeks before I’ve run out. GoodRx and Cost Plus pharmacy are great options to find good deals on generic drugs. This would also help with your worry about accessing medication if you lose access to your insurance. You can get these generic options for ~$20/month, and most people would be able to afford to pay that. It might even end up being cheaper to buy these with the GoodRx discount program than it would be to pay with insurance. I know lots of people who have insurance, and they still get their meds this way.
Hi @turtleshell, @Stephenw is right to point that out. I want to emphasize that the situation described by @Stephenw happens in a minority of patients. You may be one of the lucky patients, who knows. The majority of patients stay on treatment long-term. Therefore, it will not apply to every patient. I want to bring this to your attention so you are aware, and there are no surprises down the road. Why it does not happen in every HBV patient is unknown. It adds to HBV’s complexity. Best, Bansah1
I really appreciate you sharing your experience because I had similar concerns when I learned I would need to be on treatment for the rest of my life. Have you brought your questions to your physician? I felt a lot better after I was able to find a doctor that wasn’t judgmental about my questions and was openly communicative.
@chul_chan@Bansah1@babytobeast@sunfeng@Stephenw@et5656@Caraline@PrinceFlomo Hi all, I want to extend my biggest thank yous for taking the time to extend your compassion and insight. It was really comforting to hear about your experiences, how positive it has been for many of you to start treatment, how simple it is to manage this illness, and that there realistic and effective solutions if problems ever arise. Because of your encouragement, I felt confident enough to take the leap and start the Vemlidy—I’m happy to say I took my first dose last night! So far, so good. My husband even suggested that I get myself a cute pill case to make the journey a little lighter, so I did and I love it.
I am so grateful to have this community to lean on so that I don’t have to go through this journey alone. Thank you again, y’all are the best, and cheers to our health.
That is wonderful news. I am glad to hear that our support made an impact here. Those pill cases come in handy. I have had a few instances where I was not sure if I have taken my medication. But I was able to go back to the pill box and check. It’s been helpful. Taking the pill will become a part of your daily routine and you won’t even think about it.
We are here for you. Keep us updated on how things are going after a week or so.
Thank you for your feedback. Bansah1
So glad to hear it’s going well so far! I agree with @Bansah1 about using a pill case/organizer to prevent yourself from taking a double dose if you’re not sure whether you already took your medication. When I first started treatment, I’d also never had to take any kind of prescription medication on a daily basis, so I completely understand feeling unsure about it. That being said, my liver was not in a healthy place at the time, and starting the medication was instrumental in improving my health. I have no regrets about starting treatment. Keep us updated on how the treatment is working for you!
