Deciding when to start treatment

Thank you so much Thomas Tu. This was very helpful. Having chronic condition is a challenge before getting used to it. I routinely check my blood tests to monitor my status. Even though some of the result is hard to interpret or understand by a non medical person like me.
For example
HBsag quantitative showed >1000
While Hbsag Elisa showed 97.5 when HBV DNA was 38 IU/ML and again Hbsag Elisa decreased to 76 with the viral load became <20 IU/ML. Ideally Elisa decreases with HBV DNA viral load. They are correlated to my understanding. But hbsag showed >1000.
Is this two tests different hbsag Elisa and Hbsag quantitative? . Would love to understand the differences.
Thank you so much. Very helpful really.

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Hello everyone, i would like to say thank you healthcare workers and docs they trying to help us here first

I’m a chronic hepatitis b carrier since i was born and I’m living in U.S for 3 years now. I tried to join U.S Air Force but they didn’t let me in because of my sickness and i like to start treament but my doctor says only interferon shots can be treatment because DoD New Regulation says " History of chronic hepatitis b unless succesfully treated and the cure is documented. A documented cure for Hepatitis B is viral clearance manifested by Hepatitis B surface antigen negative/Hepatitis B surface antibody positive / Hepatitis b core antibody positive." But even I consider the potential side effects do you guys think its worth to try or is anyone here tried interferon shots before ?

Thank you everyone

If you are chronic hepatitis b carrier, chances of you clearing and not become chronic is very very slim. Like less than one percent probably in your situation. DOD does not accept chronic hep b is correct. Unless you need treatment, I wouldn’t get on medication at your age( seems like you’re younger) for life to try to get into the AF.

Definitely a great career move to join the AF, but I believe you should look elsewhere for a career.

No offense, but just truthful thoughts

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Thank you for your reply btw I’m 30 years old, AF carrier it’s not the only reason for me I want to protect my liver as well because when I searched about Hepb there’s more risk for liver cancer or cirrhosis after age 40 but liked I said interferon shots side effects make me concerned about this treatment

If it’s not a specific requirement for the DoD and the Air Force and it’s just for the purposes of treating HBV, then I have never heard that here in the U.S., you are required to take Interferon. Maybe I am misunderstanding what you are saying? Interferon is antiquated and I didn’t even think it was being prescribed anymore since Entecavir, Viread and Vemlidy have been manufactured.

I would recommend staying away from Interferon if it all possible. It has horrible side-effects for the majority of people. Especially since there are much better and newer alternative treatments now. Of course, you need to seek out a hepatologist (or a G.I. at the very least) to be diagnosed and advised on treatment.

All the best,

-Paul

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

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

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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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

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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