Below is current Viral Load.
I have been Entecavir Tabs .5 (1/2 MG) a year now.
Current Gastroenterologist seems happy with the below numbers.
With Cirrhosis common sense tells me I should be undetectable if I don’t want my Cirrhosis to to further damage my liver.
Is there anyone in a similar situation with information they can supply to me?
Or even anyone who thinks they have informed input that may be valuable.
Thanks Much!
Hepatitis B Quantitation 50 IU/mL
HBV log10 1.699 log10 IU/mL
Hi Gary, I’m a nurse who has been working in hep B from the time when I was first diagnosed 30 years ago. I’m not familiar with the units above and unsure what “hep b quantitation” or “HBV” is referring to? I think it may be referring to the hep B viral load and possibly hep B surface antigen? But hopefully one of our expert scientists will weigh in. But what I do want to say is welcome to the forum and I’m glad that you’re asking good question. As far as “cirrhosis,” have you been told by your doctor that you have cirrhosis? And if so, how are you feeling and doing? Glad to hear that you’re on an antiviral to suppress the hep B virus. Hopefully you’re also limiting if not avoiding alcohol, not smoking, and taking good care of your diet, health and stress levels?
Those are simple lifestyle decisions that can make a big difference in protecting the health of your liver. Thanks again for joining us, and at some point one of the brilliant scientists will respond. So glad you’re joining the conversation … Joan
Those numbers look like HBV DNA levels (two separate ways of showing the same information). I think that the lower those numbers are, the better. But just because it is still detectable, that doesn’t necessarily mean your cirrhosis will progress.
Indeed, it can take a long time of taking the drugs to fully suppress the virus. I myself have been on tenofovir for years and it is still detectable (but going from a level of more than 100000000 down to less than 10). I think you’re doing the right thing and can just recommend you keep getting monitored by your gastroenterologist and taking your medication as prescribed.
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 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…
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
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).
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.
Thanks, not being a math major I think I’ll stick to the top number 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.
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”.
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
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.
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
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.
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.