Welcome to Hep B community. Thank you so so much for sharing your story. I think you have articulated a lot of emotions and struggles that so many people face after their diagnosis and, by sharing your experiences, you are making others feel less alone. On behalf of those who choose not to speak (and from myself), I want to offer my deepfelt appreciation.
I’m sorry you have not had the support you need and instead was met with such stigma. I hope things will get better for you. I also hope that you can find some support from this community, many who have gone through the same thing. I myself found out I had Hep B in my teenage years, and it was a struggle to navigate the health care system to monitor it. It wasn’t until I was in my 20s that I found a specialist.
Regarding your health, it may not exactly feel like it, but you are in a good position actually. 1. You have been diagnosed: this puts you in a better place than 90% of people with Hep B, who don’t even know they have it. 2. You have been diagnosed young: this makes it likely that you don’t have much liver damage yet. Also, for people in your age bracket, it is common that you are not considered for therapy under current treatment guidelines, so you may not have missed out on anything anyway. 3. You are engaged in your Hep B status: simply by showing up here and posting, you are doing something - it is not ignoring it anymore. That is to be commended, because so many people continue to push through life actively avoiding it.
Just know, it’s never too late to begin monitoring. Even if there is liver damage, then antiviral drugs can help slow it down and even reverse it. Depending on your insurance, I think @Joan_Block mentioned that these treatments would be on the order of $30 for a 3 months supply in the US.
Nevertheless, I again hope you find some support and understanding here in our community.
Hi BJ, so good to hear from you!! And really glad that you’re joining this new forum since the HB-List is closed. As you know Michelle is a moderator on this forum, so there will be continuity. Hopefully you’ll have time to share all of your wisdom and experience in living with hep b with the “newbies” asking good questions. And yes, now that I’m retired from the Hep B Foundation, and “out of the closet” with my own hep b diagnosis, it’s satisfying and liberating to be able to join this forum to share experiences. Look forward to seeing you on this forum regularly!!! Always, Joan
Hi Juliet, I want to echo everything that Thomas just wrote because it’s true. The first steps to good health is acknowledging as issue (eg. hep b), reaching out for support and information (this patient forum), and doing your research (eg. your blood test results) and asking good questions. And yes, I would say that the majority of us who were first diagnosed with hep b felt traumatized because the diagnosis came out of the blue (what the heck is this disease?) and then the reactions from health care providers telling us and the reactions of our families and friends. It’s still such a stigmatizing disease, even in the 21st century. But there is strength in numbers - sharing your story here will help you find support from those who have traveled in your shoes, and through the support will give you the confidence to live with this condition. Strength in numbers. Information is power. These are two maxims that are helpful in navigating the experience of living with hep b. It’s an ongoing process. I was diagnosed more than 30 years ago, and am still learning new things through this forum. It does get easier as one gets older and I feel much more empowered now that I’ve shared publicly my diagnosis because I’ve received more support than rejection. But please know that at 62 vs your 22 years, there is a difference and you still have to navigate a lot of things that are already behind me. But trust this forum! And be sure to check out the Hep B Foundation (hepb.org) for a lot of good information as well as a directory for knowledgeable liver specialists who manage hep b. Thanks and hope to hear more from you. Always, Joan
Hi everyone I’m so relieved to have found you all.
“Diagnosed with hepatitis B as a child stigmatized by clinical staff as an adult” this was my search today.
Have been searching for others after being stigmatized by medical staff in the blood and cancer Dept of the local hospital since 03 August 2016 when I was admitted by ambulance, diagnosis lymphoma stage 4, then end 2018 with Bing Neel syndrome & Waldenstrom macroglobulinemia another all in all three terminals however for some reason I’m still here.
Clinical trials for Ibrutinib commenced Nov 2018 in NZ for patients with my medical condition. I was denied this option due to Hep B, then Pharmac was given the blame.
Furthermore, I proceeded to register in other countries for WM clinical trials and was referred to my present new haematologist by his country of origin.
At the age of nine years I was informed that I had a positive reaction during annual school tests done by the community nurses who said perhaps it was through birth or the sexual abuse we endured over several years.
Today I’m in my 62 year, a mother, have worked in the EU in a diplomatic function amongst other academic and IT roles returned to my country of birth decades later only to be diagnosed with cancers again, and treated as if I have leprosy.
Hi iam Alaa from sudan I affected with hbv science 2017 during taking vacinne of hbv
I took 3 doses before testing for hbv after doses make test immunity response but suprise I have positive result
I tested viral load by pcr at the First the level of virus is735 and after 2years become 32
Ihavent taken any medication
Thank you for sharing your story with us; you’ve been through a lot and I’m impressed by your fortitude that you have maintained. I hope this community can support you in whatever way it can and however you need.
You raise a great point about Hep B making your ineligible for a lot of clinical trials. It is a real shame and I will raise it wherever I can. As a scientist myself, it is really important for me to keep everything as well matched as possible so that we’re comparing like with like. It’s also easier to get rid of any confounding effects from other diseases.
At the same time, it is obvious to me that people will miss out because of this and that people who will be treated in the real world will have more than 1 condition to deal with. It is a balance and I think the academic/clinic fields may be weighted too much in one direction at the moment. Things are changing though; there are more patient voices allowed into the conversation and at least these issues can be raised (though how much they are addressed is another thing).
This viral load is quite low, so your risk of transmitting it to other people is fairly low. I think it’s promising that it is continuing to go down even without medication (under current guidelines, you would not be recommended treatment anyway). So the best thing now is to maintain monitoring (regular blood tests and visiting a liver specialist if you can) and live well (eating healthy, exercise and good sleep).
Are there other ways that having Hep B is affecting your life? Hope we can support you through these times.
Thanks for setting up this community forum, Thomas. It has been very helpful for me.
As far as my background goes, I grew up in America but have lived most of my adult life in China as an English teacher at a university. During my time in China, I have periodically taken blood tests, as required by my school, with no negative results.
However, at the beginning of February, I took a blood test and found that I tested positive for Hepatitis B. The ALT level was 122 that first time. Three weeks later, I took another blood test, and the ALT level was 1,478.9 and the AST level was 834.4. My Chinese doctor said that my case was acute and prescribed daily IV treatments with two drugs that lower the ALT.
This process continued for two weeks. After one week, the ALT was 711.6 and the AST was 382.4. After two weeks, the ALT dropped to 463.1 and the AST was 366.9. I haven’t gotten the results of my HBV DNA test, but that should come out tomorrow.
Today my doctor recommended I continue with the IV treatment for one more week. And she also encouraged me to start taking Entecavir for about one year at least, along with another drug that lowers my ALT.
Since I’m still in the acute phase, I was a bit surprised she recommended I take an anti-virus drug at this point. I’m not sure if I’m ready to commit to such a long treatment with potential side effects, but I also don’t want to give my liver lasting damage.
Does anyone in the health community have any advice? I would greatly appreciate it. Thanks so much.
There are really knowledgeable people here, I am a semi-literate idiot However, I remember hearing or reading somewhere that Entecavir was a drug that you did not want to stop and start again, as it may not work as well the second time around. A lot of smart folk here will correct me if I am wrong but I thought I’d throw it out just in case my memory is not as bad as it used to be.
Hello Paul,
I’ve been on Entecavir more on than off the past four years and haven’t noticed any side effects, however I’m also on Ibrutinib since June last year for particular cancers.
It’s hard to say whether the temporary hair loss, fatigue and cravings for sweets are side effects of either. Have experimented with various diets the past year, although I’ve eaten healthy most of my life I am now experimenting with Keto then as of next month the water fast.
Personally I would opt for Entecavir, increased water intake and plenty of exercise, accept the more frequent toilet stops as a sign your kidneys are functioning.
Last blood tests 14.12.2020 Liver
Test name Result Units Ref. Range Abnormality
Total Bilirubin 10 umol/L 2-10
Alk. Phos. 95 U/L 20-110
GGT *42 U/L 10-35 Above normal
ALT 14 U/L 5-30
Total protein 69 g/L 69-80
Albumin 45 g/L 34-48
Globulin *24 g/L 25-41 Below normal
Next blood test is due late March if this helps. Results have been much worse but then again I was terminal
and have lived an extremely stressful life balancing family and work.
Hi Paul, so sorry to hear about your current situation. Sounds serious and confusing. If this is the first time that you tested positive for hep B (were you ever tested before? did you ever receive the vaccine?), then physicians here in the U.S. would retest you in 6 months to see if you’re still positive for the hep B virus. If a person tests positive for the virus - called hepatitis B surface antigen or HBsAg - 6 months after the first test, then this is considered a “chronic infection.” Generally a person would not be started on an antiviral during an “acute” or “new” hep B infection. One would be considered for an antiviral drug after a chronic diagnosis was made. With that said, however, I’m not a physician and I don’t know the complete story about your clinical situation. Your physician may believe that you have a chronic infection, which is probably why they ordered the HBV DNA test. This is something you should clarify with your doctor because again, an antiviral drug is usually not started when someone has been newly exposed and infected with the hep B virus since 90% of healthy adults will spontaneously be able to get rid of the virus without drugs. Your doctor should explain whether they are diagnosing you with a chronic infection and why treatment is needed. Your hesitancy is certainly appropriate. As others have said, you don’t want to start and stop an antiviral drug. Hope others with more medical knowledge (calling any physicians on this forum to please weigh in!) can contribute insight into your situation. Thanks and please keep us posted. Always, Joan
I appreciate your kind words, Peter. Thanks a lot!
Just to give some context, there are ways of seeing if this is a chronic infection or an acute exposure (that may resolve or turn chronic). The lab test is generally for anti-HBc IgM antibody - if this is positive, then you have only had the infection a short period of time.
I imagine the IV treatment includes HBIG - which is composed of antibodies against HBs (and the virus itself). The idea behind this is to stop any ongoing infection, while your immune system tries to fight it off (which is likely happening due to your high ALT levels). The entecavir would be to slow down the virus replication from any already infected cells. Entecavir can also normalise ALTs and stop you from going into liver failure (a possibility if your immune system becomes so engaged in killing infected cells that it kills off too much of your liver).
The treatment of an ACUTE infection with entecavir is different from treatment of a CHRONIC infection, which is where a lot of the confusion has come in. At the end of an acute infection, you will have seroconverted to anti-HBs (this is the definition of the end of an infection). Just like anyone else in this phase, you would be taken off of treatment. I guess the year long thing might be a conservative treatment to make sure the virus infection doesn’t come back.
With the knowledge you have provided, this seems like a reasonable treatment plan to keep you safe. 1 year is relatively short for being treated with entecavir; it’s a very safe drug and most people take it for years on end with few side-effects.
Viral resistance to entecavir is rare, but can happen. The idea in this case however is that the infection is likely to resolve and Paul can be taken off them because he is not producing any more virus (so there shouldn’t be a second time).
Thanks for the advice, Joan. I have had blood tests before for different jobs in China, but I don’t know if they specifically tested for hepB. I’ve never had the vaccine. This past fall, I found out my Chinese fiance has had chronic hepB since she was in middle school, most likely from a contaminated needle. So I’m assuming that I may have gotten it from her. That’s why I’m assuming this is acute right now rather than chronic (trying to be hopeful about that).
We just got the HBV DNA results. The most recent one on March 9 is 1.304E+05 IU/mL. The first one on February 25 was 3.529E+06 IU/mL. I’m not sure exactly what the numbers mean, but the viral load seems pretty high.
Next Monday should be the last day of IV treatment, and then I’ll have to decide if I should take Entecavir or wait it out until the virus either clears my body or becomes a chronic condition.
However, I remember hearing or reading somewhere that Entecavir was a drug that you did not want to stop and start again, as it may not work as well the second time around. A lot of smart folk here will correct me if I am wrong but I thought I’d throw it out just in case my memory is not as bad as it used to be.