I hope this post finds you well. I wanted to reach out for some insights and support regarding my recent lab test results.
To give you a bit of background, I was diagnosed with Hepatitis B back in 2012. Since then, I have been an active member of this group, learning and sharing my journey with many of you. I was on Entecavir (Baraclude) treatment from 2012 to 2014 and then stopped because of financial difficulty .However, after 2015, life got quite hectic. Work demands increased, and I had to shift my focus. Despite this, I maintained a healthy lifestyle, which I believed kept my condition in check.
Fast forward to now, I am a proud parent of two wonderful kids. Juggling work and family responsibilities has undoubtedly been stressful. Recently, our company introduced a new insurance policy, which allowed me to get some much-needed medical tests done.
I received my lab results, and I’m feeling a bit overwhelmed. The results indicate that my HBV DNA levels are high, and my doctor has suggested starting Tenofovir treatment. This news has left me with many questions and concerns.
Has anyone here had experience with Tenofovir? What should I expect in terms of side effects or lifestyle changes? Is there any advice or personal experiences you can share that might help me understand this situation better? Can you please check my other lab test if this will show something. I have already summarized all my results.
Hello @Ladee
I’ve been on Tenofovir. That was my first antiviral medication. No side effects to notice.
After a few years I developed kidney problems and osteoporosis which is a rare side affect. Usually in lean people, from my research.
I was taken off Tenofovir immediately and given Entercavir.
I don’t want to scare you, but if you can get on Entercavir , I think that would be better. This is my experience only, and I have no medical or professional qualifications.
You are doing a good thing looking after your body/liver. I think we feel better when we do.
I’ve been on Entercavir for many years and not had any issues.
It’s important not to stop treatment. One pill a day, on an empty stomach, same time every day.
Compared to other treatments of disease, it’s an easy one.
I have forty years of lived experience of HBV.
Someone with more qualifications with answer your questions, soon.
Thanks for sharing. @ThomasTu@ScienceExperts
@Sent-d
It’s not a joke I contacted HBV around 1980. I’m now 64 next month.
It certainly is a struggle as members can vouch for me. I’ve had many meltdowns.
I also have faith in God which keeps me strong. Looking after my mind, body and spirit is ready helpful.
Thinking of others who are going through worse than me in their medical struggles, helps me put things in perspective.
I try to live doing the things I like, helping others, and not over doing things.
My mind is my worst enemy. Staying busy helps but not too busy that you can’t enjoy life.
On this earth I think everyone has something they need to deal with. So I’m not the only one.
Opening up on this group has been a game changer,. To be able to express my anxiety and fears in a non judgmental group, has helped a lot. Being able to get professional advice in every day language about what your test results actually mean.
I hope I’ve helped answer your question. If not let me know.
Hello
My HBV was detected over 6 months ago and was given Entecavir. I had my first ultrasound scan 6 month ago. At first it was devastating but with support from wife and family and doctor realized that it happened and came to acceptance of the disease. So far I have had no side effects and pill became just like any other daily vitamins I used to take prior to the infection. With Entecavir my AST/ALT levels has returned to healthy level. My DNA viral load was 1 million and now undetected. My HBsAB, HSeAB are positive. I will be checking again the HBsAG if it still shows positive in 6 months.
So i can say that Entecavir seems to be working very well.
I hear on this forum many that have lived or living normal lives with HBV. Also I am hearing of possible functional cure that was fast tracked by USDA. For those that just discovered that you have the disease be positive and get monitored closely by a doctor.
By looking at the test results it appears your chronic HBV became active after stopping the medication. Most likely the viral load was slowly increasing after year 2014. It appears you stopped the meds when your body didn’t fully develop HBsAB or HBeAB to fight off the virus?
My understanding is that once you get HBV you may need to take the medication for long time or for all your life. Stopping the medication causes the virus to replicate. Also you need to avoid autoimmune suppressing drugs (ie. steroids) that can reactivate HBV.
Thanks for your honest response and sharing your experiences meant alot to me and the general community your wealth of experience and contributions have been a great help thanks a bunch
Hi @Ladee,
Welcome to the community and thanks for your question. I agree with @Caraline that many patients on Tenofovir do fine, but some patients over time can develop bone loss and kidney problems. This antivirals is used a lot in many patients, so you take it your doctor should monitor you for these issues down the road. If you can get Entecavir that is a great option as well. And yes, I agree with your doctor if your viral DNA is in the millions. We would want to protect the liver from any damage. Glad to hear you have insurance now so you can get the care you need. Please if possible try not to do the on and off thing with your antivirals, they can lead to severe liver issues and we do not want that happening. Best, Bansah1
Your HBV infection appears to have responded to ETV therapy early on as your ALT normalized. However, your infection will have definitely rebounded following removal of ETV but in your case may have taken a very long time as your ALT remained normal for many years. What is curious is that your initial positive test (via HBsAg) was followed by regular ALT testing but HBV DNA was not done until after your very minor recent ALT elevation had mostly resolved. HBV DNA testing is usually a standard test done during patient monitoring while on antivirals (ETV) and would have confirmed the extent of your response to ETV therapy. This may be because the HBV DNA test was and still is significantly more expensive than the HBsAg and ALT tests.
Nevertheless it seems clear that you have not developed significant viral hepatitis during your viral rebound (which is good). While you do not appear to have any significant liver inflammation post ETV removal, the persistent HBV replication in your liver unfortunately increases your risk for liver cancer in the long term. You should restart antiviral therapy and it is fortunate that your doctor understands this.
Now that the patent for Viread (TDF) has expired, both ETV and TDF are available cheaply as generic medications worldwide. ETV is still somewhat cheaper as it has been off patent longer and is very widely used.
There is no difference between the efficacy of ETV and TDF except that it is not recommended to use ETV in patients which have previously developed resistance to an older antiviral drug called lamivudine. With both these drugs there are a small fraction of patients who experience side effects. If you tolerated ETV well previously, there is no reason to not start back on ETV again (especially if it is cheaper for you). You can also start TDF and in the small chance that you develop side effects, you can either switch to TDF dosing every other day (which eliminates these side effects without sacrificing antiviral effect), revert back to ETV, or start the more expensive Vemlidy (TAF).
Hi Caraline,thank you so much for sharing your experience and advice.
I’m glad to hear that you’ve found a medication that works well for you. It’s important to be aware of the potential risks and benefits of different treatments, and your insights into Tenofovir and Entercavir are very valuable. My doctor haven’t discussed with me the side effects of Entecavir and will surely bring this up with him.
I will consult my Doctor regarding the Entecavir because I’ve been using it for almost 2 years from 2012-2014 and then stopped because this drug is expensive in the Philippines.
Thank you again for your support and for sharing your journey.
Thank you for sharing your journey with HBV and Entecavir. It’s encouraging to hear that your treatment has been effective, and that you’ve managed to maintain healthy AST/ALT levels and achieve an undetectable viral load.
It’s possible that my viral load was slowly increasing after 2014 because I stopped the medication. While I tried to maintain a healthy lifestyle, which might have helped keep the viral replication to a minimum (I don’t have lab tests to back this up. hehe) I also understand that HBV often requires lifelong medication but I’ve also been trying to manage it naturally.
Right now, I’m not in the best shape due to stress at work and home, which makes it difficult to find time for exercise and proper nutrition. However, I’m determined to turn things around and hopefully lower my viral load again.
Thank you so much for the warm welcome and for your thoughtful response, good Sir! It’s reassuring to hear that many patients do well on Tenofovir, but I’ll definitely keep in mind the potential long-term issues like bone loss and kidney problems.
My HBV DNA levels are in the millions now, so protecting my liver is a top priority for me and I just want advice from everyone here before I start on tenofovir medication or go for an alternative.
Your support and advice mean a lot to me. Thank you again!
Thank you for your detailed insights and advice good Sir!
I’m a bit confused about the difference between HBsAg with Titer and HBsAg only. Which one are you referring to?
I will check the prices of Entecavir (ETV), Tenofovir (TDF), and Tenofovir Alafenamide (TAF) here in the Philippines. My doctor mentioned that TDF costs only 1.04 USD per pill.
Please correct me if I’ve understood that these are the possible scenarios:
I can start on ETV (if it’s affordable) but switch to TDF if I develop side effects. Does this mean I can take ETV on day 1, TDF on day 2, ETV on day 3, and so on? What monitoring should I do to check its effectiveness, and what signs should I look for to stop if it’s not effective? Should I inform my doctor about TDF’s side effects and express my preference for ETV?
Take TDF every other day?
Take TAF once per day?
Did I get it right?
Does my Anti-HBs, HBeAg and Anti-Hbe tell me something in my latest result?
Thank you again very much.
I would agree with the other posts suggesting you do not stop your medication on your own: it is important to keep taking the pills to suppress the viral replication. Simply living healthy does not suppress the virus replication.
The effectiveness of ETV, TDF, and TAF are equally high - this is measured by the suppression of HBV DNA levels.
You should only be taking one type of antiviral at a time - only take ETV every day or only TDF.
There should be no reason to change unless there is indication that it may be impacting other organs (e.g., values for kidney health change).
You can (and should!) express your preference to your doctor and the reasons behind it. Your doctor should be able to provide you with the accurate information as to whether one would be preferable to another based on your current situation.
Thank you, Thomas, for the informative response. Your explanation about ETV, TDF, and TAF in suppressing HBV DNA levels is reassuring.
I will consult with my doctor to ensure I am on the appropriate medication and discuss the possibility of switching to TAF, as I was originally prescribed TDF. I found that Vemlidy (TAF) costs $1.24 in our city, compared to $1.01 for TDF. Based on feedback from others, TDF seems to be a wise option due to its limited side effects.
Hi everyone. I am in phase 4 of having hepatitis B. I had some blood test 3 months ago and I had around 2500 viral load and recently I had another set of blood tests and it went to 7900. Minimal inflammation and scarring but my dr asked me to consider treatment for over a year. Seeing the new results I decided to accept it and he prescribed Tenofovir. Has anyone experienced any side effects and to what degree? My main concern is the side effect regarding kidney failure. What is your experience with this medication?
Thank you for your input. Have a great day.
All drugs you know are associated with one side effect or the other. There are people here who have been on Tenofovir for over 30 years. And they are doing well.
Tenofovir is tolerated for a long period of time. Just have your blood test every 6 months or yearly.
Hi @Autumn,
Welcome to the community. Only a small number of HBV patients on Tenofovir develop kidney and bone issues, while the majority do not have any problems. I believe @ThomasTu has been on it for a long time with no issues. The key is to keep monitoring, as this will help your doctor detect any such side effects if they occur. You can then switch antivirals to Entecavir or Vemlidy. I was one of those patients who started having kidney issues with it, and once my antiviral was switched, no problems.
Tenofovir is very effective and safe for the majority of patients. Go ahead and start taking it, just remember to stay monitored, it is very important. Best, Bansah1
As @Bansah1 has mentioned, the percentage of people who experience these sort of side effects is relatively low. Indeed, I have been on tenofovir for a long time and have had no issues.
Thank you very much everyone for your answers. I’ve been thinking and stressing all day yesterday but you did give me courage and now I will start taking it with a lighter heart. I will be monitoring how I feel as well during this treatment.
May I please ask another question if you don’t mind me asking… while discussing the idea of starting the treatment with tenofovir with my dr and even though he knows my lifestyle he didn’t tell me to make any changes. I don’t smoke, don’t drink alcohol, not even fizzy drinks, I do cardio but not something too stressful for the body, I avoid taking medication if it’s not needed, I don’t eat sweets. I drink tea every day, all sorts of herbal teas. I always choose things that should work for my body
I’ve done some research and the only no no would be echinacea and some green tea.
Have you been given any other instructions by your doctor while being on this treatment? Are you still allowed to drink tea? Again, as mentioned, my doctor did not specify that I should make any changes, on the contrary he told me I should eat a doughnut or 2 once in a while and stop being so hard on myself since the virus is out of my control.
Could you please share some of your experiences while being on this medication and if you had any restrictions? I am just curious how people have been reacting to this medication and if they had to make drastic changes to their lifestyle. It’s the first time I actually talk about this with people who understand and have the virus themselves so thank you very much. Your answers are greatly appreciated as they don’t make me feel alone in this. Best regards and I wish you all a nice day.
I contacted HBV around 1980. I’m now 64 next month.