Deciding when to start treatment

General Discussion
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Dear @Wadani1,

Without seeing the results themselves, I’m actually not sure. My guess would be that the ELISA is just for knowing if you are positive or not for HBsAg (there may be a threshold signal over which you would be considered positive).

The quantitative HBsAg is designed so that it can tell you the specific amount of HBsAg (in this case, it is very high - more than the highest level the ELISA is set up to measure).

HBsAg and HBV DNA does not necessarily go down together, because the HBsAg can come from virus-producing cells (which make both HBV DNA and HBsAg) or from cells with integrated virus (which only make HBsAg).

The most important thing is what we discussed earlier: your prognosis is good with your current values, but you should maintain monitoring to watch for any changes.

Hope this clarifies some things.

Cheers,
Thomas

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Welcome to the community, @Fateyo. Thanks for sharing your experiences.

Yes, this is an unjust system (for those looking for more information, the hep B foundation has a page on it here: Hepatitis B and the US Military » Hepatitis B Foundation).

Regarding getting to HBsAg-negative, yes, interferon is the only approved treatment we have at the moment that is likely to get you to this state. The side-effects can be quite difficult in many people (I have heard people describe it as a year-long flu). Perhaps @kk9 can talk about their experience on it for a couple of months.

As @NeptuneJ mentioned, it’s important to note that the number of people become HBsAg-negative after this year-long treatment is quite low (at best it is 30% in certain patients with low HBsAg levels, in general the rate is less than 10%).

If the goal is to protect your liver from liver cancer or cirrhosis, it might be better to consider antivirals like entecavir or tenofovir which have very few side-effects and are known to slow or stop liver damage. These drugs however are very unlikely to make you HBsAg-negative though.

Of course, in any case, you’ll need to find out through lab tests if any of these treatment options are suitable/recommended. Best to go to your liver specialist to find this out.

Cheers,
Thomas

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Thanks for the mention @ThomasTu. Dear @Fateyo, I was on Interferon for 12 weeks. When I started, the side effects were unbearable for me. I experienced fatigue, general weakness, and dizziness but from week 5, the side effects lessened. Also, I felt discomfort from taking an injection in my tummy every week. The Interferon didn’t work for me. So I was switched to TDF. I hope this helps. Cheers!

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Dear @Fateyo, first I want to comment you on your desire to serve in the Air Force! But as Thomas noted, the Hepatitis B Foundation has been working on the problem of our Dept of Defense excluding those living with hep b for the past several years. It’s a very frustrating process because they have their own medical experts and regulations that are independent of the U.S. Centers for Disease Control and Prevention recommendations and the medical societies. So they can make up their own rules based on data from 20 years ago!!

As far as taking interferon, it has very strong side effects so it’s a decision that should be made with a lot of serious thought. Additionally, it might be worthwhile having your hep b genotype checked since it’s well documented that genotype C does not respond to interferon. Genotype A and B might have a better response, but it’s still pretty rare.

Best wishes as you consider both your career and your health. Please keep us posted. Always, Joan

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Please I need the community to enlighten me about my result. I have been diagnose with HBV since 2015 in which my doctor have been doing ultra sound and ALT/AST and some bllood work every 6 month which is always normal except only my ALT that is always a little bit high. But my family doctor refer me to HBV specialist early this which the specialist asked to do some test 2 weeks before I see him for another appointment. I did all the test last 3 weeks and I had appointment with him 3 days ago and my result comes out as:

  1. My HBV is inactive
  2. My HBC DNA (viral load) is 92
  3. The status of my HBsAG and HBsAB is positive
  4. My hBV is chronic
  5. My AST is normal
  6. My ALT is a little bit high which is 48
  7. WBC Neutrophils is a little low with 1.2*10.9/L
  8. WBC Monocytes is low as well with 0.1*10.9/L

But my all other result was good. And he told me base on the result so far was nice and I don’t need a treatment now.

He was requesting to do a Fibro scan and same test I did for the first one in 1 month before my next appointment with him which my next appointment with him would November because he would be seeing me every 6 months.

Please everyone, hope everything is fine with me so far because I am concern about my ALT. I am scared of liver problem.

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Dear @saadepoju ,

Welcome to the forum and thanks for sharing your experiences.

It’s great that you are maintaining such regular monitoring and are engaged in your results. This is probably the most important thing in preventing any long term issues and serious liver problems.

Regarding your alts, a single slightly high value usually is not important; the longer term trends usually have a lot more meaning. This is discussed a bit in another thread here: ALT & AFP - slight elevation.

Hope this helps,
Thomas

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Thanks for the information. I really appreciate it . My mind is at rest now.

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I am hepatitis b chronic for long time.
Last result showed elevated AFP 12 and mild fibrosis (METAVIR 2) .ALT 46 AST 25. Viral load undetectable without medications. Hbeag negative. Hbsag is more than 1000.
Currently. I feel pain under the right rib cage and tiredness. I also feel mind confusion and not attentive to detail.Increased appetite and no weight loss.
Doctor says no need for treatment despite the abdominal pain.
My question is. Would the pain and tiredness go away if I start treatment. How safe is the treatment ( historically what was the longest period that some one took drugs ).
Please help I feel so depressed.

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Dear Wadani1, so glad that you found us. Welcome! Although we may not be able to answer all of your medical questions, we are definitely a community of patients and carers who are experiencing the hep b journey, in all of its good, bad and ugly parts. But seriously, in light of your low HBV viral load of 1000 and slightly elevated ALT of 46, I can see why your doctor is not recommending treatment based on the current medical guidelines. An additional question that I would ask is whether anyone in your family (maternal and paternal) has had cirrhosis and/or liver cancer? if there is any family history of serious liver disease (cirrhosis, liver failure, liver cancer), then the medical guidelines would recommend treatment.

As far as the abdominal pain and fatigue, those are common experiences of those of us living with hep b. Although I’ve never had the abdominal pain, I have suffered from greater fatigue than my peers. Since the liver functions as the “engine” of our bodies, any damage or assault on our livers will also decrease our energy levels; hence, fatigue.

From my experience, starting treatment almost 20 years ago definitely reduced my fatigue. But then again, my viral load was in the hundreds of millions!! All of the current approved antivirals for hep b are very safe. And the first antiviral for hep b was approved in 1998, so there are folks who have been on treatment that long (although switched from lamivudine in 1998 to probably tenofovir or entecavir today).

Hopefully others will jump in and provide additional experiences and thoughts to my response. But I want you to know that you’re not alone and that we’re here to help provide support and hope!!! Always, Joan

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Dear Joan_block.
Honestly, I am lost for words to thank you. Thank you so much indeed.
Just to correct my HBV DNA is below 20 iu/ml. Doctor told me it’s undetectable. Hbsag is more than 1000. My parents both are alive at their 70s and 80s respectively with no liver disease at all. My brothers and sisters are hep b positive at least 4 of them. So it could be from birth. But historically no liver disease traces in my family in the 1st generation.
The issue is with the pain under the right rib cage and shoulder behind. I have experienced itching before 3 years but lately no itching.
Given your experiences in hep b.
When you started treatment 20 years ago, how was your situation? Did you feel pain under the right rib cage ? A pain that looks like remote or far? Mind confusion? Not focusing? Sorry I took you too far. Did the quality of your life generally improve. Off course yes! But did you notice changes once administered in to treatment. This set of answers can really help me know my status.
Always my HBV DNA decreases without treatment. Jan,2020 it was 53 IU/ML June ,2020 it was 38 IU/ML and finally Feb 2021 it was <20 IU/ML.
Thank you so much.

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93

Dear @Wadani1 ,

Thanks for sharing your story. I think with a viral load so low, the reason you are not on treatment is because it probably would do nothing: the drugs lower the virus DNA and can’t lower it below 0.

For me, when I started treatment, I didn’t feel any different because I did not really have many HBV symptoms. I continue to feel no symptoms still. I am tired, but I’m not sure that’s because of the hep B and didn’t go away with treatment.

I think you’re doing the right thing by keeping your Hep B monitored and talking to your doctor about your options.

Thomas

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Hi Wadani1,

I’ve had chronic hepatitis b from birth and started on medication 2.5 years ago after my viral load finally shot up (I’m 41 yrs old). I started experiencing a dull ache once in awhile under my right ribcage a year before starting medication. After being on meds with no detectable viral load, I still feel the ache occasionally, especially when I’m stressed or on an empty stomach. Both my hepatologist and the infectious disease doctor (I’m on a clinical trial) who follow me didn’t seem to think it was related. My hepatologist agreed with Thomas and told me it was likely my stomach. I guess we want to attribute everything we feel to hep b, but it was also confusing to me because I have read so much about other patients like me who feel this pain. From what I have read, any disease that affects the liver could cause it to enlarge and create pain as it presses into the layer of tissue that surrounds it, which does have nerves. But then again, when I got my MRI in December, I saw that I had a small hiatal hernia so maybe he’s right! I’m meeting with the infectious disease doc next week and will ask her about it again, just for clarification.

I can’t speak to the tiredness because I’ve lived off of caffeine for many years and just recently went cold turkey. Worst ten days of my life! I’m still feeling off but hope to feel better with time. Hopefully, so will you!

Best regards,

Rebecca

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Thanks for sharing your experiences, @Rebecca. I hope everything goes well with treating your hernia.

I guess this definitely fits into the theme of this year’s Hep B foundation awareness campaign “More Than B”. We need to see ourselves outside the lens of having hep B. It such a hard balance sometimes to both stay vigilant for any changes that might signal our infection getting worse AND to make sure that we know that not everything is to do with Hep B. I hope this community can help o guide people through this.

TT

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Hi Wadani1, I agree with Thomas that treatment is probably not going to be recommended because of your very low viral load. I only started treatment because my viral load was in the hundreds of millions! And since I was 45 years old, my liver specialist felt I was entering the “danger zone” of developing liver cancer. Anyhow, like almost all of the patients living with hep b, fatigue is the primary complaint. When I was a child my mother thought I was lazy. When I was a young mother I thought it was because of having 2 active children. When I was older I thought it was because I was getting older. Anyhow, I now know that since hep b affects the liver, which is the “engine” of our body, any compromise in the liver’s function and assault on it (like the hep b virus) will result in fatigue. So that’s something all of us have to learn to manage, with our without treatment.

As far as the pain under the ribcage, I’ve heard that from speaking with hundreds of patients while working at the Hepatitis B Foundation. It’s a real pain but not understood (or accepted) by most doctors or health care providers. As long as your pain is not stopping you from working (or playing), then I guess it’s something to adjust to as Rebecca wrote about to you. But if the pain becomes very acute or very painful, then you should definitely seek medical care!

Thanks so much for sharing your concerns and experiences. Hopefully we can all learn from you as well. Always, Joan

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That’s me Joan. I’m 61 female. Always been skinny until now. My last ultrasound came back fatty liver. Obviously not from drinking. I do have bloating but really struggling with the fact I have fat. I don’t eat takeout, Soda, chips. On my feet all day moving, eat healthy, I do like a biscuit or chocolate after dinner but surely this is not causing my fat. I’m tired of struggling with no results.

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Hi Caraline, yep you and I have what’s known as “lean fatty liver” disease. It’s not because we’re fat and eating unhealthfully (though I do like my diet Cokes, which I try to limit. But can’t we have one vice?? I don’t drink alcohol, smoke or party…ha, ha ). Thomas Tu can probably explain the reason better than me. I just know it’s a problem among Asians in particular. It’s frustrating because the only “treatment” is to lose weight and eat a more Mediterranean diet (more plant-based diet, nuts, fish). But since we have a compromised liver already from living with hep b, I’m not sure there’s a lot more we can really do if we’re not really overweight (I’ve been trying to lose the perennial 10 pounds since menopause!). I exercise, too, but it doesn’t seem to make much difference since I’m not working out every day. Sigh! We all just have to try our best. Thanks for sharing your thoughts! Always, Joan

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@Joan_Block
Hi Joan,

I was on TAF for about 3 years starting in 2017. The hepatologist had to do a pre-authorization with insurance and then just like you, I would only get 30 days worth at a time. It always went through a specialty pharmacy for some reason. I could not get it at the local pharmacy and they would call me each month before they would send out the meds.

Last November, my new hepatologist switched me from TAF to Entecavir because I had so many issues after starting TAF. Switching to Entecavir didn’t relieve any side-effects and added a couple of new ones. She thought that changing the class of drug might cause less reaction. Since that didn’t work, early this year, she changed me to TDF. This also didn’t make anything better but didn’t add any new issues. So in May of this year, she had me go back on Vemlidy thinking that if I am going to stick with the same class of meds then I should be on Vemlidy rather than Tenofovir since Vemlidy has less medication in it and has less long term effects on the kidneys and bones; as you well know and have spoken on before.

So after explaining all that, my point is that THIS time (May of 2021), Vemlidy still had to go through the pre-authorization process and the script had to be run through a specialty pharmacy and still gets shipped to me, BUT they gave me the option for 90 day supply this time! Maybe something new in legislature? Or maybe something new with my insurance and it still depends on each individual’s insurance?

Just letting you know in case you haven’t checked into the option for 90 days recently. Hope this helps and you will be able to switch to the more convenient 90 day supply.

Hoping,

-Paul

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Good to hear Paul! I bet that 90 days supply from 30 days supply was a stress reliever. Thx for sharing your experiences.

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Wow Paul, I’m surprised but very glad that you’re getting a 90 day supply of TAF now! Makes life so much less stressful. This option must be a benefit of your particular prescription/health plan since it’s definitely not available on my husband’s plan. But at least I don’t have to personally call each month. I now receive both a text and email message where I can easily confirm delivery.

I’m wondering, though, about your side effects with TAF? My (only) issue are elevated cholesterol and triglycerides. Not benign effects! But nothing that affects my daily life like some drugs can cause (e.g. lipitor with muscle weakness). I remember a young woman writing about whether her “night sweats” were related to TAF, which in hindsight I regret that I may have brushed off too quickly as possible perimenopause in my response. Without getting into TMI, I realize that my occasional night sweats started with TAF almost 3 years ago. I never thought about the correlation before.
Anyhow, thanks for sharing your information about TAF and hopefully other specialty pharmacies will follow the 90-day option. Always, Joan

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I’m joining the club and just started taking hep B medication (TAF) a few weeks ago! I had some reluctance starting after I was prescribed it back in December so held off. My hepatologist acknowledged he was going outside of guidelines but has seen enough HCC and urged me to take it. And even though I prescribe these medications every day to patients, I had to see that it was right for me.

My HBV DNA has always been very low, but started creeping up over the past few years. It has gone over 2K once and is now hovering right there, but my ALTs are solidly under 10 (I’m a petite Asian person which contributes to that). I’m HbeAg negative with precore mutation and genotype B. No family history of liver cancer but possibly cirrhosis.

My grandparents were in the medical field (dentist and midwife) in Taiwan and both found to have HBV later in life (they practiced in the days before universal precautions and gloving!) Interestingly, I always thought I got it from my mom who thought she had had HBV at some point, but in reviewing her results, she is actually HBsAg neg, HB core Ab neg and HBsAb positive! She’s never had HBV! I can only guess that I got it from my grandparents at some point early in life.

Anyway, I just want to share that it was the mounting information I was hearing about HBV virus’ effects on the immune system that finally convinced I need to already be on medication. I’ve seen the data formtalks now about how the virus integrates in the hosts DNA (and that’s partially we think you can get HCC even without a cirrhotic liver in HBV), and as we age age, the virus actually causes HBV specific Tcell depletion and immune exhaustion in the body. The current guidelines do not take this into consideration, but that was enough evidence for me.

I felt a sense of relief as I start taking my pills., I was concerned before that it might interfere with my immune response to the virus but from what we know, I believe it’s actually the opposite. Its great to know that we have these antivirals that can effectively the viral burden, which is the best we can do for now, as we wait for better therapeutics with the hope of functional cure!

There are a lot of grey areas in the treatment guidelines, and a lot of discussion now that we should be taking into consideration the patient’s values and preferences as we decide whether medicaiton is right for them. So don’t be afraid to voice what you feel is important to you.

I’m very glad to have this community of people to do this journey with. Thanks @ThomasTu for launching this and @Joan_Block for starting the HBlist way back when with HBF!
Su

P.S.
World Hepatitis Day is coming up on July 28. We, as people living with hepatitis, need to be at the forefront of raising awareness! Hepatitis is so neglected as a disease with very little funding and global attention. We need to change this. Go to worldhepatitisday.org and download resources you can use (posters, social media graphics, zoom backgrounds and FB profile things!). #HepCantWait

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