Hi - I’m 29 and a chronic carrier from birth.
Until I was 26, was always under a viral load of 2000 IU/mL. After that it fluctuated from as low as 50 IU/mL to 21,500 IU/mL. Last year my liver enzymes were elevated for 2 blood tests w higher viral loads of 20,000 ish.
For this reason my doctor wants me to go on antivirals. My last blood test recently was lower than 20,000 but because of the fluctuations, she thinks it’s best to start antivirals and stabilize it.
I’m scared because I’m pretty young to go on medication that I’ll have to take for the rest of my life…. I’m a little scared of long term effects. I’m trying to understand what the risk of long term effects might be and when I could start seeing those long term effects? How old will I be? I’m concerned it may fix my viral load but then make me get sick in some other way when I’m say 40 or 50.
Also I’m worried because once I start this medication, what happens if you accidentally miss a day or two? Will the virus quickly come back and attack? The thought of that is also worrying for me…
Please let me know any thoughts and anyone’s personal experience with medication especially long term.
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Hi @kostas,
I empathize and understand your predicament. Starting treatment can feel so scary, but it is not what we assume it to be. I was in the same situation as you about 11 years ago. A lot of fluctuation in my results for some time, and the provider was worried, so they recommended treatment. I was concerned about this being a long-term commitment and how adherence could be a problem, knowing what could happen if I do not take my meds frequently as prescribed. We discussed the pros and cons of all the available antivirals, I was able to ask questions, and I asked for some time to think about it. Two weeks or so later, I agreed to start treatment. Taking the antivirals was the easiest thing to do. I take other medications, so I worked it into my daily routine. I have been on treatment for about 10 years now, and I can say I have not missed taking my meds more than 10 times since I started. When it happened, it was mostly insurance and pharmacy delays.
It could sound scary at first, but once you start, you will realize how easy it is. Think about your liver, you only got one, so why don’t you take care of it? Saving your liver is worth the small compromise you have to make, trust me. It will be long-term, but you won’t have time to count the days because it does not take much time to take a pill each day. Knowing what doing nothing could mean for me, going on treatment was the wisest and best decision for me. I have a daily pill box next to my bed so I see it every time I am in the room to remind me. You can use an alert on your phone initially until you get used to the routine.
Missing a pill a day or two, will not cause any problems. We all have missed a day or two, so that could or would happen. No big deal, you take it as soon as you remember. However, not taking your antivirals for longer periods is where the danger is.
I hope you find this helpful, and you will make the best decision for you and your liver. Best, Bansah1
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Hi @kostas
I want to echo what @Bansah1 wrote. Starting what could be a life-long drug treatment is scary and demoralizing. I can still clearly remember those feelings when I started taking medications for my asthma ~33 years ago after nearly passing out on a subway platform from a severe asthma attack. However, the medications have really improved my quality of life, even thought they don’t cure my asthma. The nucleos(t)ide analogs for HBV are analogous in concept–they don’t cure the infection but they improve the quality of life for the person taking them.
Your physician is making a good recommendation based on the best available medical data. You are in a situation where the drugs can help. They have very few side effects (most people don’t notice any), so you won’t have to make a major change in your lifestyle. The best drugs out there for most HBV+ people are entecavir or one of 2 versions of tenofovir (TAF and TDF). Your physician can help you choose the one best for you. The good news is all 3 drugs are 1 pill once per day, so they are easy to take.
As @Bansah1 said, missing a dose every now and then will have no long-term effect, so do your best to take them as prescribed but don’t worry if you make a mistake every now and then. We all forget a dose sometimes.
I wish you the very best!
John.
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Hi @kostas, Elisabeth here!
I started taking my medication when I was 21 (I’m 37 now) and looking back, it was one of the best decisions I’ve ever made. At the time, my liver had started to flare up, and my doctor gave me a thorough explanation of why it was important to begin treatment right away. It was all about giving myself the chance to live a full and healthy life.
It’s now been 16 years. I began with entecavir, but later switched to tenofovir when I planned to become a mom, since it’s safe for both mother and baby. I’ve had a great experience with it, no kidney issues, and most importantly, my baby and husband are both hepatitis B-free.
Today, my liver function is normal, the flares are gone, and I’m considered functionally cured. My HBV DNA has been undetectable for over 10 years. Yes, there were times I missed a dose here and there, life happens, but I’ve stayed committed to the treatment.
I won’t lie, it was scary in the beginning. But over time, I stopped seeing it as just medication. It became my lifeline, not just for me, but for my family too.
I hope this helps.
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@0r394n0
Elizabeth
Thank you for sharing your experience and positive outlook.
I too look at the medication/treatment as a lifeline now but it did take awhile.
So many emotional ups and downs with HBV.
I have now come to live with it after 40 years. If I get cirrhosis or liver cancer, I’ll deal with it-if I get it.
I’ve wasted too much time and energy on worrying but it’s hard to stop those emotions.
Thanks again
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Thank you @Bansah1 and @john.tavis! I finally just got my blood tests back and my doctor said it is up to me whether I want to start now or still wait, as not much has changed, but that I’ll likely need to start at least within the next few years.
I’m thinking that I will at least wait until my next blood test in 3 or 4 months and see.
But I feel that the longer I have to think about the decision and research, and learn about others’ experiences, I could be more ready to begin at my own will. I am always worried my tests will come back horribly and it will be urgent to start treatment asap.
Thank you both for your opinions and reassurance, I really appreciate what you do for the community and everyone here
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Hi Elisabeth, thanks so much for sharing your story. It’s definitely reassuring for me to hear someone else young who started even earlier than me and that’s it’s still going well.
That’s great that you are functionally cured!
If you remember and don’t mind me asking, do you recall roughly your viral load levels around the time you started? Also did you have any fibrosis already when you began the treatment?
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Thanks @Caraline for sharing!
I agree it’s hard to hold back the emotions. Some days I feel like “whatever happens, happens” and am at peace and other days I cannot stop worrying about what my future with hep b may hold.
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Hi @kostas,
When I first started the medication with entecavir, my viral load was 3.72 × 10⁸ copies/mL (which is about 372 million virus copies per mL of blood) and 5.03 × 10⁷ IU/mL (around 50.3 million IU/mL), with log values of 8.57 and 7.70 . And yes, I already had fibrosis.
I hope it helps.
Hi @kostas,
You are always in charge of your own medical decisions, and it is OK if you feel you want to wait till your next blood test to decide to start treatment or not. HBV disease is slow moving in the very large majority of people, so there is unlikely to be a big change in your liver function over a few month time period. It may be useful to consider as you make your decision that many millions of people around the world are taking the drugs for HBV infection, and the vast majority of them are happy that they are on treatment.
Good luck!
John.
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Hi…
Four years ago, my last year in college with my best friend walking to class, we saw a tent with doctors volunteering, testing hep B and free vaccination for college students, it still feels like yesterday, my best friend convinced me that we go for vaccination but since I was scared of needles, i first refused and she insisted, I followed her, i literally didn’t know anything about the disease, i would see it on the news and thats it, our blood was taken for testing and results came back, i saw positive on mine and hers negative, I was shocked and beyond confused, I don’t remember anything from that day, i woke up in the morning with my best friend sleeping besides me, we decided to go to a bigger hospital for another test but sadly it was the same results, so you can guess how my last year ended BAD 
. I decided to concentrate on finishing my studies and face this my new life afterwards, my one and only boyfriend I ever had tested negative and got vaccinated, after graduation I tested the viral load and it was high, my doctor suggested I start medication, i was scared to death, but I was told how medication will help me and i started, its very hard when your young, my boyfriend broke up with me etc but faith , prayer and hobbies have helped me so much. Now my viral load is undetected. With medication, there are a few side effects but it depends on the person.It gets better with time. Likewise i got it at birth.
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Hi Elizabeth
Thanks for sharing, i really want to be a mother and i was worried about the whole situation, i don’t want to bring a baby in this world to go through this but since you shared that medication has helped you to protect your baby, thats amazing, however is it the only medication you’re given or there are others?, I have read about it but i wanted to share more about it with someone who is like me and has gone through it.
Hi @Lilibet94
Thank you for sharing your story. I felt every word because I have been there too. I was diagnosed in my final year of university, and honestly, I was terrified. However, somehow, between the medication and keeping myself busy with everything else, I found a way to stay afloat and stay hopeful.
During my pregnancy, I only took Tenofovir and a multivitamin, just as my OB-GYN advised. I stayed on Tenofovir even while breastfeeding. And after birth, they gave my baby HBIG and the hepatitis B vaccine right away.
Like you, I was afraid to have a child at first. I did not want to pass on something that felt like a lifelong burden. But knowing there were steps we could take to prevent transmission changed everything. And so, we chose to move forward.
I hope it helps
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Hello Elizabeth
Thank you so much for replying me.
Oooooohhhhh we are strong soldiers 
indeed and we have alot in common.
From what you have shared, I didn’t know if we are allowed to breastfeed the baby etc but i am willing to learn more, do more research about it so that when time comes i am ready, obviously will start to talk more about it with my doctor but i hope its okay, if i can always reach out to you about this.
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