Hi Everyone. My name is Elizabeth and I am 28yo and have had HBV since birth. I was born in and currently reside in the USA. My mom contracted it in the Philippines when she was an infant and passed it on to me. I watched my mom battle this disease all my life. She was treated in 2004 with interferon and lamivudine and is now testing negative for HBV infection! At the time of her treatment she found comfort in these forums and recommended I join the online community.
As for me, after 10 years of close monitoring through labs, ultrasounds, and fibroscans, my doctor and I have decided it’s time to start implementing treatment. I will be starting Peg-interferon and tenofovir next week for 24 weeks. Unfortunately, I have genotype C and my doctor said there’s a chance the treatment doesn’t work because of how aggressive my virus is, but we’re hoping for the best. Because I have seen my mom go through this process, I am well prepared for what’s coming, however, my husband has never had anyone in his life with this level of illness, or this severe of medication. Any advice on how to prepare him mentally for what’s coming or how to best support me through this process?
Thanks in advance!
3 posts were merged into an existing topic: Hepatitis B and Immigration/visa issues
Welcome @Elizabeth95
I’ve been on Entercavir for about 5 years. With no side effects. It has lowered my liver results so no damage is done.
Is it necessary for you to have Interferon ?
From my understanding it is quite severe.
I have lived experience of chronic HBV, 40 years, but not an expert.
Some one will help you further, soon.
I’m sorry you are going through this but well done for being proactive and contacting us.
We are here for you.
Hi @Elizabeth95 ,
Welcome to the platform. As Caraline mentioned, I have not been on interferon but those who have do not have nice things to say about it. It is good that you were with your mom when she had her treatment so at least you know something to prepare you for this journey. For your husband, I will say talk to him. Share with him what you observed your mom go through. You might not have the same experience but it will be great to let him know so he will be able to find ways to support you. His support will be helpful. Wishing you the best and keep us posted. Bansah1.
Hi @Elizabeth95,
Welcome to the forum and hope you find the support you need here.
To answer your question, many people have different experiences with interferon. Please see these threads: Peg interferon treatment and Experiences and queries about interferon therapy and feel free to ask any follow up questions there.
Cheers,
Thomas
Hi @Caraline and @Bansah1 . Thank you guys for the warm welcome.
My MD has opted to start me on the interferon therapy due to how quickly my labs have taken a turn for the worst. Funny enough, my moms progression was on the exact same timeline with things getting significantly worse very quickly once she turned 29 years old. She ended up having cirrhosis and was extremely close to needing a transplant, but fortunately had a good response to her medications. At the time, she was part of the interferon clinical trials and was only able to complete 4 months before having to stop because the side effects were so bad. Fortunately, that amount of time actually worked and she’s now HepB negative on lab tests. The idea is that hopefully I’ll have the same positive response and we’ll be able to reach a functional cure early before I start having children. I’m young and otherwise in perfect health, so I’ve got that working for me. I think my MD chose the interferon too because I’m genotype C which has shown to be resistant to some treatments.
As for my husband, I’ve filled him in on all the details of my family’s past experiences with interferon therapy. Hoping things go smoothly next week!
That is great. I am E genotype and have no idea how that will respond. We will all be cheering you on and hope that it goes well; and you can clear it in a shorter time than your mom. Keep us posted on how it goes when you get a chance. Best, Bansah1.
Hello,
I don’t know if I post this correctly here or if I just answer to another post
First of all thanks for this forum, I’m glad that I found it.
My name is Bernd, I’m German and I currently live in Spain. Since a year or so I felt very exhausted for periods of up to 6 weeks with muscle pain and general fatigue, just as one would feel the day before getting sick. I thought that it would come from stress but lately I decided to do a blood test at the doctor. Today I got my results. It was hard for me to understand what exactly was going on, because my Spanish is not so good, but here is what I think the doctor told me.
I have three types of herpes virus and that is the reason why I feel tired and sick so often. However it was also found that I was exposed to the Hepatitis b virus. The doc told me that I most likely got it while having unprotected sex and I should contact my latest sexual partners. I can pin this down to one person that I had sex with around 5 months ago but the person thinks I’m blaming her for infecting me and says that it can’t be from her while at the same time refusing to get tested. From what I know I could also have had it way longer than that without noticing and might have infected her. The doctor told me that I would have to do another blood test in two months and then we would know if my body fights of the virus or if I have it chronically. Until then I just have to wait and only have protected sex ofc. Is there anything else what I can do? And what exactly do the values on my test result even mean? Is there a way to find out since when I have the virus in me?
It says <2,00 UI/L btw
Thank you and all the best to you,
Bernd
Welcome @Bernd
Thanks for Sharing your story and sorry you are going through this uncertain period of your life and a waiting game for you.
I’m not an expert as in a doctor or scientist. I’ve been on this forum since the beginning and chronic HBV 40+ years.
Many of us never know how long we have had the virus or where we got it from. We just have to live with the fact that we have it and try and manage our lives.
My advice to you is to live a healthy lifestyle, eat Mediterranean food, exercise, no drinking or smoking watch everything that you put into your body, goes through the liver. Do not have unprotected sex, share razor blades. Keep wounds covered.
Be positive.
Someone with more experience than me, will be able to answer your questions soon.
Hi @Bernd,
I join Caraline in welcoming you to the platform. Your results shows that you do not have hepatitis B virus(HBsAg-Negative); which is great news. I am guessing that per your doctor you may have been exposed recently but you will need other tests to confirm that and whether you have immunity or not. (HBsAb, HBcAb).
Most people exposed to hepatitis B as adults are able to clear the virus within 3-6 months; if they don’t after 6 months then it becomes a chronic infection which occurs in 5-10% of adults.
It is always good to practice safe sex if possible, because there are other STI’s or STD’s out there that one can be exposed to. In all, per this results you should feel good that you do not have hepatitis B despite your past exposure. I hope this is helpful and feel better from the herpes soon. Bansah1
Hola Brend,
Por lo que se desprende de tu analítica, no tienes hepatitis b ni la has tenido nunca.
El ac-anti core totales es negativo y ese es el marcador que indica contacto con el virus.
Los ac del antígeno de superficie (hbsac) también son negativos, lo que significa que no estás inmunizado, por lo que sería importante vacunarte contra la hepatitis b.
Es una lástima que haya médicos hoy en dia que den diagnósticos erróneos por desconocimiento de los resultados de la hepatitis víricas.
Saludos
Thank you guys for the warm welcome and your messages. If the test only means that I don’t have the active virus in me, then why the doctor said we only know for sure after another test in two months? And what does the value indicate that she highlighted in yellow? Because that is the one that she refered to when she said I might have had contact with the virus.
@Luis @Bansah1
Could you guys give me any thoughts on this? That would be highly appreciated. Thank you in advance!
Hi @Bernd,
Sorry I have not gotten back to you soon. I am not sure what the test highlighted HBcAc is. Never seen it before.
Here is a look at some of the hepatitis B test and its interpretations:Use the following chart to help you and your doctor interpret your blood panel results:
Tests Results Interpretation Recommendation
HBsAg
HBsAb
HBcAb
Negative (-)
Negative (-)
Negative (-)
NOT IMMUNE– has not been infected
but is still at risk for possible future
infection – needs vaccine
Get the vaccine
BsAg
HBsAb
HBcAb
Negative (-)
Positive (+)
Negative or positive (-/+)
IMMUNE – has been vaccinated or
*** recovered from previous infection –**
cannot infect others
Vaccine is not needed
HBsAg
HBsAb
HBcAb
Positive (+)
Negative (-)
Negative or Positive (-/+)
ACUTE infection or CHRONIC infection – hepatitis B virus is present – can
spread the virus to others
Find a knowledgeable
doctor for further
evaluation
HBsAg
HBsAb
HBcAb
Negative (-)
Negative (-)
Positive (+)
UNCLEAR – several interpretations are
possible – all 3 tests should be repeated
Find a knowledgeable
doctor for further
evaluation.
This was in a tabular form but it all kind of collapsed. Here is how to read it, take the first 3 tests, then the next 3 shows whether they are negative or positive. Then what follows is the interpretations and recommendations. And as you can see, there is no HBsAc. It might just be a test not used in other countries. I understand you are concerned, but having HBsAg negative should give you some relief because it indicates you do not have the virus. But other tests have to be conducted to make more sense, like HBsAb, HBcAb etc. I hope this is helpful. Bansah1
@Bansah1
Thank you so much for the swift reply. I’ll look further into it. I’m very grateful!
You are welcome. It will be important to find out whether you have immunity and if you do not, then you need to get vaccinated. That will actually give you the protection you need and a piece of mind knowing you don’t have to worry about hepatitis B. One less stress there.
I will encourage you to practice safe sex if possible, because there are other diseases beside hepatitis B out there.
Keep us posted when you get more information. Best, Bansah1.
Dear @Bernd,
Welcome to the forum and thank you for sharing your story. Sorry you’ve had such a stressful experience.
I would agree with @bansah1 and @luis’s points: there is no evidence from the test results that you have hepatitis B.
From what I can gather, you have:
- no HBsAg, which shows you are not infected
- no anti-HBc antibodies, which shows you have not been exposed to Hepatitis B
- the highlighted test is anti-HBs antibodies (Ac for anticuerpos in spanish), which is below protective levels. This means you are not protected against hepatitis B. The best practice in this case would be to get vaccinated against Hepatitis B (3 shots over 6 months).
Hope this alleviates some stress.
Thomas
@ThomasTu @Bansah1 @Luis @Caraline
Thank you so much for your messages.
I feel relieve but also still a bit uncertainty at this point.
I really wonder why the doctor then made all this fuzz?
She even wrote on the test (not visible because I cropped the picture) “contacto con el virus” or “contact with the virus”.
She must have read the test incorrectly then?
I made an appointment with a specialist at a private clinic for Monday evening and will show the results there too.
I will keep you all posted.
Have a beautiful day everyone
I hear you. But here is the good news, even if you were exposed there is no evidence from your test that you currently have hepatitis B.
And let’s even assume that you are exposed and have the virus, there is a 90 percent chance that you will clear it as an adult. That is not the case for most of us born with the virus (we have about 10% chance of clearing the it)
But seeing a specialist might be helpful. If confirmed that you don’t have the virus and immunity, please consider getting vaccinated asap. It will give you a peace of mind about hepatitis B.
Keep us posted on how things go. Best, Bansah1.
Sure will do. Ill have the appointment tonight and will keep you posted. Thanks a lot!