Starting Hep B treatment dilemma - Please Help

Just diagnosed or new to the community
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Hi everyone, I just joined this community and I think it’s great! I was diagnosed with chronic Hep B in my early 20s. I think I was infected when I was about 16 and I am now 50. I never received any treatment, have very minor liver lesions and normal liver function. My viral load is just over 8,000, a jump from over 2,000 a few years back. In the past my body managed to reduce the viral load to almost zero by itself but then it gone back up. I have regular 6 monthly check ups, have a healthy lifestyle, good diet and I practice yoga, Ayurveda and meditation. However, despite all this, I have struggled with fatigue for, what feels like, decades now. My bloods consistently come out as normal with only minor decreases in iron and B12 - no definite deficiencies. Over the years I’ve also struggled with fibromyalgia, although this is mainly under control except of occasional flare-up when I get stressed. Though I manage these well with diet and lifestyle adjustments. I am not on any medications, though I do take peony root to manage menopausal symptoms.

Overall, I would say my body has managed the virus very well but fatigue continues to be a major problem for me and I am linking it to chronic hep B. I feel that just because there is no damage doesn’t mean it is not putting strain on my immune system, nervous system and every other function of the body. It requires energy to constantly keep this virus supressed.

Yesterday I saw my liver doctor for a routine app and I asked her about current treatment options, mainly because of the fatigue tbh. She told me about tenofovir and said that although normally they wouldn’t prescribe it to someone like me, if I opted in I could start the treatment. Since then I have researched the meds and everything else again and now I am not sure. On one hand, it would be nice to help my body supress the virus and keep it under control reducing risk of future complications. On the other hand, I really don’t feel like introducing anything into my system now - I am not on any meds and hardly ever taking anything, opting for Ayurvedic and yogic approaches to my health. Although, the virus itself is a foreign body. My main concern in fatigue and I am hoping that the antiviral meds could help reduce it or even eliminate it, if the viral load is reduced to zero. But I am also aware of the side effects of which fatigue is one together with kidney issues etc. I live in the UK but my lifestyle also includes travelling abroad, sometimes a lot.

I am really struggling to make a decision… This morning I thought that I should go on it and I spoke to my dr on the phone agreeing prescription. Now, after doing more research, I am not sure again. I feel anxious. It is a serious medication and I have never taken anything like that before.

Has anyone been in this position before? Do you struggle with fatigue too and noticed much difference/improvement after starting the treatment? Any advice will be much appreciated! Thank you :slight_smile:

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Like you, I was against any medicine. But I finally took Vemlidy. I felt much better after that. It is worth it.

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From what I understand, TAF has fewer kidney-related side effects than TDF. Each daily TAF tablet contains 25 mg tenofovir alafenamide.

In China, many people diagnosed with chronic hepatitis B start antiviral medication at a young age, per the latest clinical guidelines that recommend proactive treatment after age 30. That said, many clinicians advise against disrupting the body’s immune balance if liver function remains normal.

Regarding persistent fatigue, I’ve long struggled with low energy. I’m in my late twenties and have been on TAF for three years. Honestly, I haven’t noticed any significant fatigue relief from TAF. But I also live with complex CPTSD, which independently causes constant fatigue as well. So my circumstances may not be helpful. I now have regular check-ups every six months. My blood viral load has stayed below the test line the whole time.

I’d also suggest keeping an eye on your hepatitis B e antigen levels, alpha-fetoprotein (AFP) and liver ultrasound results during follow-ups.

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thank you so much for your response @Dan It really helps to hear from people who have experience with this.

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Thank you for your response @Accompa_H :slight_smile: Yes, I assumed TAF will be what I will get. Although, I have asked my friend who is undergoing treatment at the moment and she was prescribed TDF. She is also in the UK and at the same clinic. From everything I read, I prefer to take TAF but now not sure if they prescribe it here? Does anyone from the UK know?

I am finding it hard to decide, mainly, I think, because I haven’t done anything about the hep B to date and I have known about it for almost 30 years… Although, when I think about it, I have to also consider my age and how this may impact by body’s ability to continue suppressing the virus without causing any liver damage. The side effects worry me a bit too…

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You don’t need medication,what you need to constant healthy lifestyle and eat more of vegetables and fruits, proteins.. take coffee and green tea.

Neva pray to start antiviral is everlasting

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Thank you @chigoziekingsley5454 , that’s very true! :folded_hands: But I feel that even with the healthy lifestyle, which I pretty much maintained for the past 10 years plus, the virus has multiplied. Though, not excessively, still at mild-medium level for me. And yes, that’s the dilemma - take it or leave it and wait until it gets higher. Whilst hoping that it never gets there at all…

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So I have been doing some research - on here and generally online, and it looks like TAF is not prescribed in the UK! Anyone knows if that’s correct? I will be asking my Dr on Monday… I think if I start, I would prefer to start on TAF and if not, maybe wait until it is prescribed here…

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Hi,

I also have chronic HBV and I understand what it means to be fatigued most of the time. In my case, I was an inactive carrier like you for more than 20 years and in those times only the first generation of HBV antivirals (LAM) were available and only qualitative HBV testing was done. But more than 20 years my HBV reactivated and started to damage my liver, so I started antivirals and I was under them ever since (I have changed 3 different ones) and have been HBV DNA negative all the time. Regarding the fatigue issue, I think I was feeling much less fatigued before I started antivirals. Frankly, I am not sure this is caused by antivirals and not but stress and ageing. It’s really hard to pinpoint this one, but surely just stressing about the disease and the associated risks can contribute to fatigue. No matter what you decide, it seems science and medicine are edging closer to the HBV functional cure and bepirovirsen is most likely be available next year, so if your liver function tests are normal, maybe you can wait it out until then.

Good luck!

P.S. I switched from TAF back to TDF because of the problem with cholesterol caused by TAF. Only a small number of people have kidney issues with TDF, so I am not sure there is a big advantage of TAF over TDF. Also, I think my HbsAg levels on TDF dropped more than on TAF.

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Hi @Roxyoxy,

I’m sorry to hear of your dilemma. I am a PhD researcher, so I cannot give formal medical advice. However, I can give informed information because I have studied the virus since 1992. Hopefully this information will help you make your decision.

It is quite common for HBV levels to climb as people get older, and ~50 years old is a common time for people to start feeling the effects of the infection even if they have had no symptoms for many years. Fatigue is a common symptom of HBV infection, so the onset of fatigue at the same time your viral levels climbed indicates that it is probably HBV that is causing it. Also note that the higher levels of HBV are likely causing more damage to your liver than you had been experiencing with lower viral levels. You are within the treatment guidelines for most of the countries in the world now that the guidelines have been updated in most places. That indicates that the consensus of the medical science is that treatment will help people in your situation.

Tenofovir works by blocking synthesis of HBV DNA. It is extremely good at that, and most people respond very well, often reducing HBV DNA levels below the limit of detection after 6-12 months. Tenofovir comes in 2 forms, TDF which is older and cheaper, and TAF which was designed to reduce side effects in the minority of people who experience them. The drug is very safe–it has been prescribed for HBV and HIV infections for over 20 years and physicians know who is safe to give it to and who it is not safe. Most people have no side effects from the drug at all. People who have troubles with it can shift from TDF (that is what they normally start people on) to Entecavir or TAF; both of those drugs work the same way as TDF and are also very safe drugs.

Tenofovir (and Entecavir) greatly slow the liver damage that HBV can cause, and most people who have elevated liver enzymes have the enzymes return to normal when on the drugs. It often, but not always, can also suppress the fatigue associated with HBV. As we really don’t know how HBV causes the fatigue, we cannot predict who will be in the minority of people for whom the fatigue is not suppressed.

If I were in your shoes, I would feel comfortable starting tenofovir (as TDF) or entecavir. However, that is a very personal decision, so I encourage you to discuss this with your loved ones and your medical team, and then do what you feel is best for you.

I wish you the very best.

John

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Thank you very much for your response @Ace , it’s really helpful and I also wasn’t aware of bepirovirsen. This is very exciting! It makes me think that maybe I should hold back for a bit longer… I had tests done last week and curious to see my viral load - the 8,000 was from 6 months ago. If it stayed the same or reduced again, then maybe it makes more sense to wait…

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Thank you so much for your response @john.tavis , so very informative and positive. I am really curious now to find out my test results from the blood test I did last week. I might speak to my Dr again next week about them.

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As you’re in medium level focus on monitoring your liver function and hbv very important..

You can only consider meds when you’re getting older, but some people do clear it at that age..

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Some people lose hbasg when they get older especially people with low levels below 1000ul/ml

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I guess you should start meds immediately, because you said there is little lesson in liver…

Start immediately

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Hi @chigoziekingsley5454 thank you. The lesions are only very tiny and there are only 3 i think. Though this was about 3 years ago…

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Nice to hear that, but at your age,is good to start meds to make that virus undetectable to be 100% safe side..

And I pray that you will lose hbasg

Thanks

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You might want to get the lesions checked again. If they’re still there, you might want to get a biopsy. Do you know what your liver enzyme tests are like? I have very significant fatigue when mine are significantly elevated. If that’s the case for you, it’s very likely that starting the medication will help. If your liver enzymes are normal, there’s less certainty that the medication will help with fatigue, but it will still help to slow the progression of liver disease.

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Hello Roxyoxy

It’s an interesting topic regarding fatigue/tiredness.

I suppose there are many different causes. Yes of course there’s hep b. Of the top of my head it can be due to lack of glucose, dehydration, lactic acid buildup, lack of sleep, low level inflammation. There’s probably other reasons.

I can appreciate everyone will have their own individual experience. So I can only describe my own experience. I started on the entecivir treatment (subsequently changed to tenovofir) a few years ago. I do recall after about 12 months that tired feeling did reduce. I have since participated in a clinical trial that involved vir3434 and interferon. I know this is subjective, but I do believe the fatigue/tiredness caused by hep b doesn’t currently exist.

However I believe one of the possible side of effects of interferon is that it causes inflammation which leads to fatigue/tiredness. Which I have been experiencing during and post treatment. Mainly localised around the upper body.

So I have the book exercised by Daniel Lieberman, that had been sitting on my desk for over a year. He’s in the field of evolutionary biology.I have managed to start reading it, I came across the chapter where he talks about hunter gatherers continued to do low level movements during the evenings. Why its important is that it counteracts the low level inflammation.

So I figured I would just practice movement I.e no weights or resistance unless you count gravity as resistance. Amazingly it got rid of the fatigue in my shoulder and straight down my back. The remaining spot is around the side/rear of my rib cage surrounding the liver. It’s difficult to perform movement around that area or maybe it’s a different cause. It’s somewhat counter intuitive. The body is sending signals telling your body is tired so it’s best to sit down. But the best option is to actually perform movement.

I know you mentioned you do yoga which should be great for counteracting low level inflammation, but that is unlikely the cause of your fatigue.

I know it’s strange discussing the difference in fatigue caused by hep b and interferon. Definitely subjective on my part. I thought it was worth mentioning, at least show the path I have taken and interpret as you will. Maybe someone that go on from taking entecivir/ tenovofir to participating in interferon treatment may encounter similar symptoms.

In terms of fatigue caused by hep b. I suppose there’s no guarantee that it will get rid of it or at least reduce it if you go on medication. However your viral load is likely to go down which should put less strain on the liver. You may even go on treatment later on, although as I understand it the hsbag level plays a key role.

Anyhow I am not an expert. Just personal experience:).