Hi
My consultant has asked me to make a decisison about treatment. I cannot decide if I would like to try the injections first (interferons) or go for tablets (antiviral drugs) straight away ?
I am worried about the side effects and adjustments I will have to make.
I would like to hear form anybody who is taking any of these dugs and their experiences.
Much appreciated!
I would go for the tablets first (Tenofovir) then if that doesn't work, try interferon. The injections have many side effects so I'd advise avoiding it if you can.
When I was first diagnosed with Hep B, I was never offered a treatment, just monitoring. 9 months later interferon was suggested after much insisting by myself but in the end it was decided not to proceed with it due to my platelets count being critically low and the injections would bring it even lower. I started Tenofovir around 15 months after the initial diagnosis but by then the liver was decompensated and wouldn't metabolise anything properly so the tablets didn't help.
Good luck
Thank you for your replay. How are you now? What is the next step for you? I am so sorry to hear that the medication is not helping anymore 
I'm fine now thank you 😊. Had to get a transplant around 17 months ago as my liver was damaged beyond repair 😔. So thankful to be given a new lease of life though.
That is great news! 
you have been very lucky have another chance 
When you took Tenofovir, did you experience any side effects?
I was under an impression that the drugs were helping to protect the liver from the damage by hep b? Wy your liver became decompensated? Is this because you started the treatment too late?
With everything I was getting at the time it was hard to tell if the tablets were causing any side effects. I still take them now and haven't noticed anything too concerning. The minor fatigue and tremors sometimes are because of the immunosuppressants anyway.
Not sure why my liver changed to decompensated. I was eating well, working out, not drinking.... It may well be due to the treatment being started too late. I guess we'll never know...
Thank you for sharing your experience. I much appreciate it. I am like you. I do not drink (only have an ocassional drink on Xmas or birthdays). I exercise. I try to eat well e.g. avoid processed foods etc. But my viral load is going up and up. Having dg of hep B is a very lonely place to be (it is for me) as the diagnosis is very stigmatising. Thanks again and I am wishing you all the best for the future
Thank you! I'd push for the tablets sooner rather than later. One of my friends is taking Tenofovir for hep B and her viral load is under control.
Good luck
K
Thank you
Read your post how old were u when diagnosed with hep b? Did u have other health issues at the time? The reason I ask is because I read that most adults can clear hep b so a bit worried as I was recently exposed and very scared.
Good morning,
Further to what KLDN says;
You can go to the British Liver Trust website for further general and specific information on liver disease.
britishlivertrust.org.uk/he...
Also, there is a HealthUnlocked group dedicated to hepatitis B which you might find useful.
healthunlocked.com/hepatiti...
Jim
Hi Jim
Thank you for your replay. I have read the BLT leaflet, I will check out the group
Thanks again
I was started on Tenofovir which worked fine for about 6 years but proved toxic to my kidneys after that time - a known side effect. I'm now doing well on Entecavir. There is one more, older, drug that can be used - Lamivudine. Once you have been treated with a drug you cant go back to it later if needed, as you develop drug resistance. Personally i would avoid interferon like the plague, old style treatment, ineffective and horrendous side effects.
Thank you Bolly for sharing your experience, it much appreciated. Initially, my consultant told me that interferon would be a good start as there is a slim chance of getting rid of the virus. However, when I saw him few months later, he told me that tablets would be a better option as the chance of getting rid of the virus is very very slim. I have been confused ever since. I have been think about interferon, but then I wonder if it worth it to make my life horrendous due to the side effects and then find out that treatment was not effective and start the tablets anyway. On the other hand I thought, what if I miss my chance to get rid of the virus. Do you experience any side-effects from the viral drugs? Thanks
Forgot to say when I was about to start interferon, I was told there was a 20% success rate, so it only works for 1 in 5 people! Sorry to make things more confusing for you but thought I'd mention it.
I've never heard of Hep B being 'curable' or cleared by interferon (or any drug). I do know that Hep C can be cleared by interferon, but they no longer use it as a first line treatment for Hep C either. My understanding with Hep B (and I've had it for 35+years) is if your body is going to clear it naturally it will do so within 6 months of infection. After that it's deemed 'chronic' and the viral load can be suppressed to limit the damage done to your liver and to reduce the amount of virus in your blood. You will always need to declare you are HBV positive in any situation where body fluids are exchanged, not just doctor and dentist etc.
Tenofovir daily is what I have been taking since June ,2015,. According to an infectious disease specialist I saw ,he said those with Hbeag negative do great when put on tenofovir but those with Hbeag positive are treated mostly with inteferon.my viral load was over 4,320,000 when I saw I had hepb but now by God's grace my viral load is undetectable and my lft is back to normal.but the only issue is that ,it's hard to be out of the tenofovir treatment once you start it since it's lifelong but hopefully very soon will be a drug to cure this disease as lots if clinical trials are going on.its very promising.
Thank you for taking time to replay to my post. Much appreciated! I also they will find a cure. I asked my Dr if he knew anything about new treatments being available soon and he was not very hopeful. I have been thinking of getting involved in clinical trials. But i am not sure what would happen to me after the clinical trial has ended. And i am a bit concerned about the risks. Well fingers crossed! Maybe some cures will appear soon 😃
I'm very optimistic there would be a cure soon.so for now just go about the treatment and avoid alcohol outrigh.Train daily,eat healthily, pray to God and believe He is able to cure any disease therefore you trust him to do so in your life.Thats what I know and believe.
Thank you very much for your support. I am quite disappointed that at the time of the diagnosis my dr did not give me any advice about alcohol and diet. Only after searching info myself i realised it would be a good idea to give up alcohol. I also started to exercise because of my sedetary lifestyle not because of hep be. Do you now some good website with liver friendly recipies? Which foods do you avoid? Thanks
Avoiding lots of fatty foods especially read meat,also salty food and processed foods.i do add lemon to water and drink every two days to help me not put on much weight as maintenance of a healthy weight is very important when it comes this disease.adding more garlic in my meals , eating mostly with carrot ,cacumber and jogging or walking daily .the main idea is to maintain a healthy weight.
Thank you very much for your advice! Much appreciated! I do find it helpful and inspirational! It is sometimes difficult to stick with healthy habbits, especially during festive seasons! You do inspire me to carry on! Thanks again.
Hi, my life turned upside down when I knew I got hep B 4yrs ago. Luckily my partner has been there for me to support me along the way. I’m on tenofovir for a while. ALT has been back to normal level in my 1st yr. Virus was undetectable in 2nd yr. I took the interferon treatment only once when I was diagnosed with hep B initially. The side effect didn’t happen to me.I dropped off When I decided to get pregnant first. It’s kindly regretted as I heard the 1 of 5 successes chance to clear the virus. Tenofovir certainly have side effect fatigue, stomach pain, depression etc. In long term, it helped to boost my immune system. Good luck xxx
Thank you! I do understand what you mean! I find it very difficult to come to terms with the diagnosis! I living reasonably happy life. Feeling healthy... and every time i see my Dr.. i have to relive the trauma of having the diagnosis. I have tried to change my life style... i hardly drink any alcohol, try to eat healthy etc... but my viral load is going up constantly... it feels so unfair... i am very lucky to have a very supportive partner as well. But i struggle to talk about the diagnosis with anybody else... now i have to choose which medication to take which very likely change my life... it is a very isolating place to be... so thank you for sharing your experience... much appreciated.. it took me few years to join this forum. But it has been really helpful. Best wishes to you.
Hi, I’m truly over the moon I found your guys have experience and understanding. My life’s used to live in the dark tunnel no light these yrs. The feeing of sick fatigue eat me up. Cheerio, keep fighting everyone.
This place and people are amazing! I am really grateful for all the answers and suggestions! It is so nice to share my stress and worries and get some support and inspiration! Thank you everybody! We can do it! 💪💪💪💪
Hi BlackMamba, I know it’s an old post but I thought I’d try answering anyway. I am dealing with EXACTLY the same dilemma...I’m chronic Hep B, slightly raised ALT and very high viral load. My doctor wants to start treatment and I can’t decide whether interferon or tablets. I’m terrified about side effects of the interferon as I have a full time job I can’t lose. Meanwhile, I also heard about the potential cure percentage and as you, I’m worried to miss out.....
Anyway, have you started your treatment yet? I’ll be meeting my consultant in November so I am trying to gather any information I can...Thank you.
Xx
Let me know how are you getting on.
Hi! Thank you for your response. I am still having the same dilemma. Will see my consultant in November as well. He is seeking the 2nd opinion. Ordered more tests e.g. fibro scan and ultra sound. I refused to have another biopsy because the first one was a disaster. The consultant is not sure whether to start treatment or not. As my viral load is very high but no scaring and liver function is OK. But viral load is 11k. I still cannot decide. I may opt for the life long treatment. As with interferon I will not be able to carry on full time job or my hobbies. My understanding is that side effects are horrendous and there is only 6% chance of clearing the virus. Tough choice. I asked to my consultant if there are any medication trials going on re cure. He told me that he was not aware of any. Stay strong. It is tough. I know.
Thanks for you reply! I’m also on a side of taking tablets tbh. Seems like we are going exactly through the same thing! Good luck to you and stay in touch!
It sucks and please stay strong too. x
Hi there, I was diagnosed with chronic hep b in 2008 and stared on entecavir. This successfully brought my viral load to undetectable levels and I was fine until 2014 when I started to become resistant to the medication. I was given the option of other tablets or trying pegylated interferon 2a, which my consultant didn’t really recommend because of side effects, but said there was around 30% chance of clearing the virus. After considering for a couple of days I opted for the interferon. One injection per week for 48 weeks. I had a few side effects, tiredness, low white blood count, but nothing too bad really. After the treatment And a number of repeat tests I was told I was clear!
I know I was probably lucky with the side effects, the list my consultant went through before I started nearly put me off, but I’m so glad I persevered and took the chance.
Wow! So happy for you! Congratulations!
Thanks, it was hard to believe at the time and I’m still going for annual check ups with my GP but it has changed my life .
I believe you! Do you mind sharing how old are you? I am just wondering if your treatment has been very successful because you are very young
I’m 59.....not so young!
That is good news. One of my worries is keeping my employment. Do you think it is possible to keep a full time employment whilst having interferon treatment? Do you think I should take some time off work at the beginning until I know how o can cope with the side effects? I have been trying to discuss my options with occupational health department but they were not very helpful.
The main problem I had was feeling tired all the time. This was apparently due to the medication depleting white blood count. They gave me injections of Filgrastim to bring it back up. It seemed to work ok. I guess the type of work you do will determine whether you could manage to carry on. I’m mot sure if my experience is typical, but I was ok with a bit of rest. When I spoke to Occupational Health at work they were quite supportive, even told me that I was covered by disability discrimination law which meant they had to make reasonable efforts to modify my work to allow for treatment. I never pushed that though.
Thank you very much for sharing your experience. I do appreciate it.
No problem, good luck with your treatment. I know it’s difficult knowing what to do for the best, but at the end of the day you just have to go with what feels right for you. If my experience is anything to go by there is always hope! 🤞
Thank you
I would go for antivirals
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