INTRODUCTION THREAD: People affected by Hep B

Welcome to our community, Alaa! Hope you find the support you need here.

Cheers,
Thomas

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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.

Thank you for listening.

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Praying for a fast recovery.

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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

Dear @19Kaipe59,

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).

Thanks again and stay safe,
Thomas

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Please I need method to dealing and living with hbv

Dear @Alaa,

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.

Hope this helps.

Thomas

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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.

Paul

There are really knowledgeable people here, I am a semi-literate idiot :wink: 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.

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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 :slight_smile:
and have lived an extremely stressful life balancing family and work.

Kaisarina

Thank you Thomas, for responding it’s a blessing to know someone cares.

Kaisarina

Thanks for the tips, Kaisarina. I appreciate it. I hope your health improves.

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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.

Cheers,
Thomas

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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).

Cheers,
Thomas

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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.

Thanks for the advice, Thomas. That is helpful to know. Normally, I rarely take medication, which makes me a bit hesitant to take a drug daily for one year. But if it doesn’t have any serious side effects and helps my body fight the infection (even in the acute phase), maybe it’s a safer option than waiting for the virus to hopefully leave my body in 6 months.

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Hello everyone :slightly_smiling_face:

wow, I am impressed by the community.
I am Linda, 27, and have chronic Hepatitis B since birth. My mom had it, so I had it even though I got vaccinated the first day. It now had been 6 years that I am successfully on Tenovofir. I am here because I am scared of the impact hepatitis has on my dating life.

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Dear Linda,

Welcome to the community, hope you get the support you need here.

We have had some discussions on talking to others about hep B. You might want to check out the following:

Hope these help.

Cheers,
Thomas

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Linda how do u have it if you got vaccinated

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