Viral Load & Cirrhosis

Yes my Doctor said same that they represent same number but in different ways, though how one can be so high and the other so low is confusing too me. I was told the log 10 is more representative of viral load, unsure if true or not. I truly appreciate your input. I was leaning your way as was my Gastro Doctor., however a second opinion doctor implied he wanted to change stuff if next blood test was not undetectable.

Below is progress, this months were similar to November but I don’t have hard copy. Two MRI, and one FibroScan show Cirrhosis with 4 small non-cancerous lesions. Endoscopy shows no varices. Compensated fairly well as ALT, AST, Bilirubin Total, Coagulation time high by very small amount and Platelets stay at 112 or lower.

I have read various NIH studies that implied changing and going back to meds does not turn out well. At 62 if the cirrhosis gets worse over time I will be too old for a transplant, all this assuming COVID doesn’t get me first :wink: I am Asian American, immigrated from South Korea. With what I’ve read about Hepatitis B being endemic to Asians I don’t see how I could go 30 years and still not have been diagnosed.

I am leaning towards leaving well enough alone, The Entecavir .5 Mg has absolutely no side effects for me. I have a rash now and again, but a very bad rash was what finally got my Hepatitis B diagnosed, it was a long path. The bad blood numbers were for a long time chalked up to the fact that I was an Acute Myeloid Leukemia survivor back in 1993. Again thanks to all. Just one of many on this journey…

April
HBV 11,700,000 IU/mL
HBV log10 7.068 IU/mL

August
HBV 780 IU/mL
HBV log10 2.892 IU/mL

November
HBV 50 IU/mL
HBV log10 1.699 IU/mL

Gary Butler

Hi Gary, this is Joan again. Interestingly, we’re the same age! And I’m also from Korea originally (adopted at 4 years). Anyhow, I wasn’t diagnosed until I was 30 because I changed nursing jobs and the smart employee health doc tested me for hep B since I had an elevated ALT (and not even that high! She later told me it’s because I was from Korea where she knew hep b was endemic). Anyhow, like Thomas my viral load was in the billions when I was first diagnosed. But since my ALT levels declined and remained low until my mid-40’s I was just monitored regularly. At 45 years, my doc put me on lamivudine because my ALT was increasing and more importantly, since I didn’t know my family history, she didn’t want me to unknowingly develop liver cancer. Family history is important for hep B patients because if there is cirrhosis and/or liver cancer among relatives, then earlier treatment is indicated. Anyhow, to make a long story short, I have been on 3 different drugs (lamivudine, tenofovir and now TAF) and my viral load has been undetectable. In the earlier years, the viral DNA was detectable like Thomas wrote, but at least it was well below 1,000, which is key to the effectiveness of a drug. The fact that your viral load decreased rapidly means the entecavir is working!! That’s really good.

And as far as not getting diagnosed sooner, the reality is the chronic hep B is a silent disease with few symptoms. So most folks don’t find out unless something comes up that requires medical attention and there is a smart doc who thinks to test for hep B.

Ok, I am too wordy! Let me end by saying thanks again for sharing your story and questions. Every person who joins the conversation, contributes to the conversation is helping another person. Thanks!! Always, Joan

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Thank you for your kind words again. Like you I have no idea about any of my family. I am what is commonly known as an orphan. Was “caught” at about the age of ~6 months or younger stealing food at an open food market with a budging abdomen and moved to an orphanage. Being adopted at 4 you were lucky, you probably don’t know the plight of orphans in Korea (especially female), but it is about as bad as anywhere in the world I would assume. (PS I use me husbands email).

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Hi Gary,

The reason behind the different numbers is the following:

The first number is just the amount of virus in the blood (viruses per mL)
The second number is equivalent to the log of that number.

For example 50 IU/mL is equivalent to 10 to the power of 1.699; 780 IU/mL is the equivalent to 10 to the power of 2.892; and so on. This just becomes an easy way for clinicians and pathologists to communicate the level of virus to each other (because of the huge range). I hope this clears it up.

It looks like your levels are continuing to go down, so I can see why your gastroenterologist is pleased with them. An indication that the drugs are not working (and a reason you may have to change over) is if you see a big and persistent increase of virus levels. This doesn’t seem to be the case at all.

With regard to not diagnosing it earlier, I agree with the points that Joan has made. Chronic Hep B can be asymptomatic until really late in the disease. And being tested for it is just not on the radar for people. Because of this, 90% of people with chronic Hep B do not know they are infected. So just by knowing about your infection, you are doing better than many others.

Hope this helps.

Thomas

Thanks, not being a math major I think I’ll stick to the top number :wink: Knowing that I am much less interested in additional or different meds.

However, about the early detection I still feel the same. If the web is correct that Asian Americans are 5% of the population but are half of all the chronically infected folks with Hep B in the US then Med School should teach their students to test ALL non US born Asian American for Hep B.

Hi Gary,

Yeah, that’s true. There have actually been multiple studies showing that it is actually cost-effective to test everyone (not just Asian migrants) for HBV and there is a movement (in Australia at least) to push for this in health care. It avoids a lot of implicit assumptions based on background profiling. For example, the prevalence of HBV in New Zealand is more than twice as high as the prevalence in Malaysia even though we probably think of the latter as more “Asian”.

Thomas

From a public health perspective getting every Asian person tested would be a good way to identify infections and, ultimately, helps protect the individual’s future health since early diagnosis results in better outcomes. But from a civil rights perspective, the risk of testing every asian is potential stigmatization and discrimination. Stigmatization because if only Asians are tested, then it can be perceived as an “asian disease.” Think of our awful former president who referred to Covid-19 as the “Kungflu” and now we see increased violence against Asian Americans, particularly the elderly! Discrimination still occurs because of the lack of understanding that hep b can be prevented through vaccination and controlled with medications. I would be very rich if I received a dollar from every person who asked me whether hep B was the same as hep C or hep A. The general public doesn’t know the difference!

One of the things I was actively involved in with the Hep B Foundation was discrimination against HBV-infected students applying to medical school as well as medical students who were kicked out just before starting clinical rotations. Although we were successful in getting the CDC to update its guidelines and the U.S. Dept of Justice to add hep b as a protected condition under the Americans With Disabilities Act (ADA law), the foundation still fields calls from people who face discrimination because of their hep b. Granted, compared to 30 years ago when I was first diagnosed, there is less discrimination. But it’s still real and present.

So, therefore, I know smarter people than me are wrestling with the public health vs. civil liberties issues around testing. I believe EVERYONE should be tested for hep b so they can protect their health earlier than later; and ultimately, I think it would result in less stigmatization and discrimination.

OK enough on my soapbox. Thoughts from others? Thanks … Joan

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I don’t know, I was not arguing that CDC should put out guidance, but come to think of it that may be the only way. However, if I was a gastro Doctor somewhere along the line I’d realize that Hep B is endemic in Asia and if I had a patient I’d at least mention that this is an issue and just tell the patient to Google Hep B and Asia. Not sure how I would work it but I got to believe that if I were a gastro Doc I’d figure out a way because I did not get in this business to let people get sick without at least knowing the odds…

It’s probably more of Asian males than females, after certain age and status. Women who are pregnant, at least in my state are tested. My wife was tested by her obgy every time she was pregnant. Me, my doctor told me to take the test after liver levels were high. If not, I would not know about my hepatitis because liver ast/alt levels been normal since then.

I was very lucky to find out and unlucky, I guess, to have it. I ve tested my kids every other year since my discovery and they be all got 3 rounds shots agains.

I would suggest all races get tested.

Hi all, my apologies for being on a soap box in my previous post! I’m an activist as well as a patient (and co-founder of the Hepatitis B Foundation), so sometimes I slip into my “yelling” mode. With that said, I agree with Gary that doctors (esp our GP’s) should know to test every Asian because we are indeed at high risk of being infected with HBV (it’s not a genetic thing; it just so happens that hep b in endemic in Asia, parts of Africa and a few other regions). Unfortunately many are just so busy they don’t think of it. And one doctor I know said that he missed diagnosing someone because “she spoke perfect english,” so he didn’t think of her as being at risk. He was very upset with himself. A lot of suffering and needless death would be avoided if people at risk were diagnosed earlier than later. And I agree with Neptune that everyone should be tested. Thanks, Joan

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A post was merged into an existing topic: EXPLAINER: Lab results and their interpretation

Hi all, just a question.

If you are on medication such as Tenofovir daily, how does the risk of developing cirrhosis change?

I trust no medicine currently can eliminate the risk of developing cirrhosis completely but does it reduce it to almost a similar level to that of a normal person.

Thanks

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Hi @ArchAngel,

Welcome to HepBcommunity!

Regarding your question, there is still a risk of developing liver fibrosis and cirrhosis, but this is much lower than if you were untreated. The majority of people who are treated with tenofovir and have some fibrosis/cirrhosis find that their liver does not get worse (~50%) or even gets better (~45%) after 5 years of tenofovir treatment. Only a very small number (1-5%) get slightly worse.

Source: https://www.sciencedirect.com/science/article/pii/S0140673612614251?via%3Dihub

Hope this helps!

Thanks,
Thomas

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Thankyou, that’s really helpful

10 posts were split to a new topic: Interruption in antiviral treatment after moving country

7 posts were split to a new topic: Deciding on treatment and liver biopsy

2 posts were split to a new topic: Living with Hep B in the Solomon Islands

Dear Thomas
thank you very much for your feedback really appreciated .Its great community such a powerful support for all of us.
Thank you all for the response.
Regards Askul

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Hi Joan and Everyone,

I agree. Automatic testing and vaccination need to be US policy! Now that I, at 52, have been diagnosed as having chronic Hep B about a month ago (donating blood was the starting point), I am stunned, angry, and disappointed that we do not have universal vaccination and are not pumping more money into research. What the hell are we thinking in this country?!

So hard to be hopeful! But I guess I am going through the anger phase of healing.

I am just so glad this support network exists.

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Hi @hopefulone, we are all upset that there’s no mandate to require hep b testing AND vaccination. In the U.S., all pregnant women are supposed to be tested for hep b so that if they test positive their newborns receive the first dose of the hep b vaccine and one dose of HBIG within 12 hours of delivery. But this doesn’t always occur, unfortunately. When the CDC required all “baby boomers” to be tested one time for hepatitis C, we at the Hepatitis B Foundation and other advocacy groups wanted hep b testing to be added since it would be so easy to take one blood sample. But of course it wasn’t added, which was very frustrating.

Just so you know, the Hepatitis B Foundation and our advocacy partners were able to persuade two members of Congress to support HBV vaccination! So we’re thanking @RepHankJohnson and @MazieHirono for introducing the resolution to designate April 30th as National Adult Hepatitis B Vaccination Awareness Day in the U.S. House and Senate! This is a small step but at least it would add some visibility. Always, Joan

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