I took Baraclude for 3 yrs 3mths and seroconverted to HBe neg/anti-HBe pos. and dna was undetected for about 2yrs. I recently stopped in March. But my recent lab results showed the dna is detected again.
March '12 - Stop baraclude
June '12 - hbv dna 1260 IU/ml
July '12 - hbv dna 966 IU/ml, ALT - 10
My dr said my levels are stable but may also cause liver damage over time. He mentioned the virus in my body belongs to the pre-core or core-promoter mutation group. And he also recommended me to take lab tests every month to monitor.
I wish to know what does "pre-core" or "core-promoter" group mean? What are the repercussions?
Does low hbv dna mean a lower risk of liver cancer?
What should i next do to improve my condition? continue to be on medication? or am I ok to stop and just monitor first. I am thinking of a natural treatment like taking phyllanthus niruri and thymus gland supplement. Anyone knows if it will help?
I forgot to mention that before baraclude treatment, my hbv dna was very high...probably about 8 log. So if it can be stable at less than 4 log, isn't it good? Or does hbv dna not make a difference at all in lowering risk of liver damage/cancer?
Up to March 2010, The Center for Liver Health at CUHK studied nine literature reporting HCC recurrence in chronic hepatitis B patients. 551 patients were studied, of which 204 had antiviral treatment and 347 were untreated controls. The analysis reveals that antiviral treatment was associated with over 40% risk reduction for HCC recurrence as compared with the untreated controls. Furthermore, antiviral treatment was associated with more than 85% reduction in risk of liver failure and more than 70% risk reduction in death after HCC treatment.
I don't have any ready answers for your situation. Rules that allow patients to stop antiviral treatment successfully are still being developed. So we are grateful for your effort and hope to learn from your experience. Do keep us posted.
In the old days, seroconversion from HbeAg positive to HBeAg negative was considered the end point of treatment as HBeAg negative was taken to indicate a low replication phase, accompanied by very low hbvdna and normal ALT. But few years ago, they discovered mutant forms of the virus - pre-core or core promoter HBV variants - that prevent or decrease the production of HBeAg. So even though a patient is HBeAg negative, the virus is still actively replicating, as indicated by increased level of hbvdna. This is now called HBeAg negative chronic hepatitis (as distinct from HBeAg positive chronic hepatitis) and usually requires treatment.
So your doctor thinks that you may have the pre-core or core-promotor variant form of the virus. I am not a doctor, but I don't necessary agree with your doctor on this. The reasons are complicated but basically I believe there are differences between spontaneous HBeAg seroconversion and drug-induced seroconversion, as in your case.
I think it is a good idea to keep monitoring your hbvdna and ALT closely, as you may still have stopped successfully. HBV is tricky and there is a lot to discover.
there are no reports about stopping baraclude and clearing the virus but there are reports on tenofovir and adefovir taken for long periods like 3-5 years and then stopping it, i dont remember exact numbers now but something like 40% cleared hbv definitively
since adefovir is similar to tenofovir but so weak that is not firstline drug anymore it is best to use tenofovir for this
Thank you for your valuable advice. I will continue monitoring, though 1 mth monitoring now seems quite stressful, as each time I will be very anxious of the lab results.
It seems that after stopping baraclude, I kinda feel something is missing and I actually do not mind being on medication for the rest of my life if that really can assure my liver health. But because I am planning for a 2nd child, I decided to stop for the moment.
I am thinking to take phyllanthus niruri and thymus gland supplements (bought off the pharmacy shelves type). I read that these 2 natural herbs will help improve liver health and immune system. In fact, some (though very rare) CHB carriers actually lost their HBsag after that them. Wonder if you support this?
by the way, would like to ask you on ur opinion about the risk level of liver damage/cancer for my case, based on my lab results.
And I read that high ALT is good as it means immune system attacking the virus. But on the other hand, I also read that we should always check that ALT is within normal range as it correlates to liver health. Which is true?
"there are reports on tenofovir and adefovir taken for long periods like 3-5 years and then stopping it, i dont remember exact numbers now but something like 40% cleared hbv definitively"
40% HbsAg clearance on tenofovir or adefovir? Seems way too high. The link you provided a few days ago (https://docs.google.com/file/d/0B8E77QizhkLQdGdMamkwaXVFSDQ/edit?pli=1) showed only 10 out of 302 people cleared HbsAg after 30 months of treatment. That's only 3.3%.
Interest in Phyllanthus niruri has been around for a long time, in India, China, and many other countries. Over 10 years ago, an Indian doctor published a paper on its effectiveness in treating hepatitis B. However, it has never developed into a drug. Other researchers reported indifferent results. There are always issues involving composition(which specific strains, parts of plant to use), preparation and dosage. Bottom line is that there is not clinical trial that shows it is effective against HBV. I would not use it until there is more evidence.
I have not heard of thymus gland supplements. Of course, there is Thymosin, an orphan drug approved for liver cancer by the FDA. I believe it is very expensive. It has never been approved for Hep B.
Vitamin D is worthwhile considering because many people are deficient and it has immune function in that certain receptors on a type of immune cells require it to work. So you may like to ask your doctor to test your Vitamin D level and take it if it is low or spend more time in the sun.
Drinking coffee also has a protective effect on the liver.
There is another person in the US heplist forum who has stopped ETV: his numbers are:
Stopped Baraclude after almost 4 years on 2/13/12
I am using Phyllanthus niruri along with other siddha (One of the indian medicine system) medications for the last one year. the HBSAG got dropped to 3480 iu/ml from 7000+ and HBVDNA dropped to 984 iu/ml from 66K. But i need to stop Phyllanthus niruri due to some other health issue. Now that i got cured from the other disease, my doctor asked to me continue Phyllanthus niruri along with other medications.. My HBSAG was 8890 two months ago (yes it went up from 3480 to 8890 due to other medical condition as i stopped Phyllanthus niruri ) and now -on aug22nd - it is dropped to 6479.. a drop of 2400 in two months.. i will take monthly test and post results here. BTW my dna count was 204 iu/ml (as on 30th Jun). I did not take the HBVDNA after jun as it is costly ($120)
another member smile_boy is using LIV 52HB (an indian ayurveda medication) and has shown consistent reduction in HBSAG eventhrough during the initial stage of use of LIV52 HB, his HBSAG went up and now it is under 500 IU/ML.
request smile_boy to post his results here
Note: this is not endorsement for any of the medications that we are taking but just want to share what we are taking.. I would recommend it only after clearing HBSAG myself...
May I know the phyllanthus niruri that you took, was it in capsules or powder form? How much do you take everyday? Any side effects when taking it? I actually thought herbs can't cause any negative things..am surprised your dr asked you to stop it for a while.
I have actually been taking COenzyme Q10 for the past 1 mth. Anyone knows if it helps liver health or lowering HBV? I took it mainly for immune system, but I know coenzyme q10 helps o build stronger and healthier cells faster. Any comments appreciated!
I am not taking Phyllanthus niruri alone but with other siddha medications. also my doctor did not guarantee to cure me of HBV.. He told me that he can take a call after completion of treatement for one year.. but before that one year period i have got into another issue and has to discontinue.. I am currently taking 6 medications and Phyllanthus niruri is one among them.
ggtm: I am not taking any capsule but either fresh leaves or powder of dried leaves... fresh leaves would be the best as it will give the maximum impact.. I am taking it twice a day 10 leaves each..doctor said that much would be enough..
I am also taking turmeric and pepper on a daily basis.. also taking vitamin d. and some iron supplement in the form of siddha medicine ( to help my CD4 count..not sure)..
As i said earlier i am not recommending this to anyone to try but will do so once i am cured of HBV without any relapse
Note: in siddha , Phyllanthus niruri has been a standard medicine for HEP A
I'm trying to understand more about the hbv virus, but seems every year there is something new to learn. Last time, seroconversion of eag was the end-pt of treatment. Now, it seems like it's not.
Also, Im trying to figure out if a flare of ALT is good, as I read up that it means your body recognises the virus and immune system is starting to attack the hbv virus. But on the other note, I also read up that its best ALT remain at normal levels as it correlates with liver health. Where is the fine balance?
In one the levels of eantigen produced, due to a general reduction of viral burden and expression efficiency becomes so low that the ever present antibody can effectively neutralize the circulating e-antigen, while it is still produced in the cytosol and no mutation took place to block its primary production.
This is a good situation, because now the core and e-antigen specific Tcell responses can come to help reduce the HBv activity, partly by recognizing epitopes processed inside the hepatocytes from the remaining cytosolic e-antigen into core/e-antigen class I specific immunproteasome processable and hepatocyte MHC class I presentable epitopes. Thus the immune response is targeted to infected hepatocytes. Viral load and liver disease gets better and frequently a low level disease carrier state is achieved. Or even a further progression to surfade antigen elimination is achieved in some cases.
The second reason the e-antigen gets seroconverted is, that its intracellular production is dramatically reduced due to mutations that render its transcription to almost or completely invisible.
These are called Precore mutations since the e-antigen precursor protein, the "precore' protein is blocked in its start codon.
As a result no more e-antigen is present in the cytosol and no class I epitope presentation from this potentially quantitatively important "epitope donor" is possible.
Thus the hepatocyte HBV infection is invisible to the outside for Cytotoxic T Lymphocytes (CTLs or cd8 Tcells).
What is left is a class Ii stimulation of dendritic cells by secreted Dane particles that carry the core, that is digested in phagolysosomes of the dendritic cells mainly inside the liver and has several class II epitopes that activate epitope specific helper Tcells (which previously were tolerized by the massive decoy protein, the e-antigen)
but now no more, leading to a proinflammatory intra liver environment with nevertheles relatively low effectivness for virus elimination.
The net result is a lower viral production and load, but often a substantially strong level of hepatitis and consequent fibrosis progression. Stefano is an example of this unfortunate scenario and so are many others.
In this case antiviral are needed to protect the liver by eliminating the majority of the stimulus that results from the above mentioned stimulus of Dane particle processing by dendritic cells and macrophages.
ALT flares are only good if they lead to surface antigen loss and seroconversion. Otherwise they are stepping stones to increased fibrosis and examplary of a chronic war with episodes of destructive battles with no decisive useful but only deleterious outcome.
What is the most common kind of e seroconevrsion for the people that seroconvert naturally without NUC's. (I think that this is most common way for e seroconversion)
As far as I know for people that seroconvert naturally we have second kind, the one with Precore mutation and in this case one question will be why in the treatment guideline is not indicated to treat in immunotolerant phase in order to be maximise the chance not to select a Precore mutation
In case of Precore mutation you say that we have a proinflammatory intra liver environment. How this can be see ? (ALT / AST or ? )
I had VL come back up after taking ETV for 4 years..
As soon as I stopped it (a month later) Viral load went up to, 100,000 in a month time, and to 300,000 in two moths time of the Baraclude.
So I started taking it again. and my VL in a month was undetected again. What was interesting though my ALT and AST levels were normal as HBV was rising. I have too precore/basal core promoter mutant infection.
This is what I have, very nasty form I am told..
Precore Codon 28 wild type
What was surprising to me is how quickly I have HBV bouncing back up without ALT and AST getting elevated. My Hepatologist thought that maybe I should not worry about DNA levels and wait till it gets up there in the millions with abnormal ALT and AST and then try to treat to it with Peg..
But got scarred of this VL and went back on Baraclude.
I took Phyllanthus Amarus. back in 2007, before Baraclude. And ND I saw promised me he will cure me. But VL was multiplying almost weekly..
My 2007 VL before treatment was kinda going like this..
February 2007 - 5,000,000 copies
March 2007 - 11,000,000
April - 26,000,000 (on Phylanthus)
May or June, 246,000,000 (on Phylanthus)
ALT was slightly elevated I think it was like around 80. With 246 mil HBV DNA I was loosing about one pound a day..
Started ETV 1mg in July 2007 I think VL was close to 500,000,000
September of 2007 VL went down to 16,000,000
October 2007 VL around 100,000
November 07 was Undetected..
Bristol Mayers were very happy took all my labs, also dumped me from medication assistance program because at that time I had no health insurance because I was to messed with stress to be able to work with all this.
So the bottom line here Baraclude definitely works and Phyllanthus did not at least the one I tried that is sold here in capsules at health food stores..
strange but these are facts.. yours as well as mine..i am not sure how the powder is made in case of capsules..i am taking the fresh leaves whenever it is available and powder made from leaves whenever fresh leaves are not available.. i am taking this along with turmeric and pepper powders along with other siddha medications (thripala and Karisalai Karpam Tablets and amukkara chooranam)..I am not going to post anything till I get some concrete results from my medication..
Again pls do not follow my medications as siddha medications are recommended based on one's medical condition and the medications will vary from person to person
We don't really have access here to siddha medications. The herbalists here that do try to treat illnesses with herbs get most of their information on line like we do or from supplement companies.
But there is also this opinion. If there were herbal medications that did work on viruses like HBV don't you think in India and China HepB would be such a big issue?
We all wish that any herb would be able to cure HBV. It would be a miracle! Maybe there is such a compound is available in nature or can be produced from plants. But how come in India and China then they are not doing mass clinical trials on what they know with their traditional medicine and report the results.
I just think if they were able to treat HBV with herbs it would not be such a problem.
I spoke with a guy who tried Grifola (Mayetake mushrooms) they are said to cure viruses too. But until he went on Tenofovir his HBV dna did not decline also.
I am not saying to exclude plants at all from treatment programs.. They need to be looked into more closely. I am just saying that if there was a way to beat HBV with herbs, we wouldn't be sitting on these medical forums searching for answers and hoping for cures or to live to see that day..
Thank you for ur very informative reply. I am slowly digesting all that information.
I have a qn though: Is it better for our immune system to be stronger and detect the hbv virus and hopefully kill them slowly? (or at least this is my logical thinking). But I read some forummers commented it is best our immune system DO NOT flare up and detect the hbv, cos that would mean injuring our liver cells and causing damage.
This qn has led to me thinking whether I should be taking stuff to help boost my immune system or not now.
Thank you and appreciate your time reading and reply. I must say this is a wonderful forum!
I did not manage to find the phyllanthus leaves. But only found one powder type on Amazon.com. I went to a few indian supermarkets in my area and they said the closest they have is gooseberry powder, which is also phyllanthus family. Is this ok too?
And abt this herb, if you google it, research has linked phyllanthus niruri and amarus to hep B and that it helps reduce VL and improve liver health. I was wondering if this is widely known, then why won't it work on some hbv-ers? Are there any factors that should be considered before taking this herb?
I am not intending to take phyllanthus with the hope to cure hbv completely. I just want it to control the virus, perhaps make it undectable without anti-virals? And also improve liver health. You think this is achievable?
I also read that there are no side effects on this herb. Can you share your knowledge on phyllanthus? I am very new to this herb. Thank you!
From what you write you have the core promotor mutation only, a very very common mutant in almost all e-antigen neg patients.
It improves the production of the core particle - a stronger promotor is generated- this translates later into a higher viral load and more agressive T-helper respopnses in the liver - somewhat more inflammation. Its exact prognostic importance is still under debate.
But you do not have the precore blocking mutant - you have wildtype. This makes sense, since you are genotype A. Genotype A has , dependend on some subtyping also, a very high genetic barrier to develop the true precore stop mutation, that will truncate the precore protein and eliminate its processing towards the the e-antigen.
A genetic barrier in this case is a codon triplet configuration that requires more than one mutational step to convert this triplet nucleotide into a stop codon. This does not easily happen in Genotype A.
Genotype D on the other hand, has one single step to convert to the stop codon, eliminating the intracellular e-antigen production and hence the danger of Tcell detection.
You are well advised to keep your Baraclude or, a little better, Tenofovir treatment at this time. The chances that you could flare up upon discontinuation and then clear the surface antigen and cccDNA by the resulting immune response are very very small. The add on Interferon would help, but it could take years to achieve a stable loss of cccDNA.
And the lack of the quant surface antigen monitoring availibility where you live means that all that painful effort would have to be conducted in the dark. You need to see how you respond so you dont get the IFN side effects for no final benefit.
Regarding your hopes with GS9620, the likely outcome is that the dose will have to be so high to achieve the forced cccDNA clearance, that the side effects become untolerable in humans.
The AASLD meeting will only show an abstract reporting the response of human peripheral blood mononulcear cells (PBMCs) in an in vitro assay to Gs 9620. It will be no surprise that there will be a response in cytokines produced and surface acvtivtion markers enhanced. But this means little for the clinical effectiveness studies that are needed.
i dont know when these human patient in vivo pilot studies will be presented, they should have started by now. Maybe there will be a late breaker at the AASLD.
The proinflammatory milieu in the liver in case of the second mode of e-antigen seroconversion by precore stop mutations is indicated to some degree by the ALT, that you can measure. Other important aspects, like increased fibrosis or enhanced mutations, HCC enhancement, activations of NFkB, can only be measured in research settings.
The concept to prophylactically prevent the occurrence of the precore mutation by treatment with antivirals at an early still immuntolerant stage might come in the future. Currently it is still hands off in this scenario.
The fact that the ultra high viral loads of these patients will increase the HBV fragment integrations into the hepatocyte genomes, increasing the later chance for liver cancer is not well known (i have to find the paper myself, but it was well done.) Thus the treatment recommendations are likely to change in the future in this directios.
It also depends if we can learn more about thus far unknown long term complications and side effect of chronic antiviral medications. There is still reasonable hope that this is not a real problem.
Unfortunately, there is not simple a weak or strong immune response, as i have explained in the past, It is the quality and specific subfeatures of the immune response that determine if it has a good antiviral effectiveness WITHOUT a lot of collateral unspecific activation. It is also called or related to the phenomenon of non cytolytic clearance.
To simplify the question, if there is a strong local interferon gamma production directly in the liver, it will lead to a deactivation of HBV cccDNA expression and replication without significant collateral damage, like unspecific macropahage invasion, TNFalpha activation and other rough proinflammatory cytokines like interleukin 6 etc..
With thymosin alpha, there was a weak but quite consistent long term positive effect, presumably on the quality of the Tcell response, not convincing enough in the USA to allow approval, but it was approved in numerous other countries for HBV treatment based on those studies.
so, should we understand that the second mode of e-antigen seroconversion is the most popular one ?
and for monitoring the inflamatory activation we have:
- ALT (even borderline ALT have to be considered)
- Fibroscan / byopsy (for monitoring the liver fibrosis)
- HVB DNA ? - it should be monitored in case of teatmant, how about the case of people that aren't under teatmant ?
- ecography - for HCC detection
Do we have some other test that should be done ? (even in a research facility)
I do not have exact data on hand for this, but in genotype A mode I is more prevalent and in Genotype D the second mode with the precore stop mutation is much more common.
The modes of monitoring that you list are all informative. HBV viral load is informative in regard to the effectiveness of intracellular blockage of replication by gamma interferon and other cytokine or Toll like receptor responses that trigger intracellular machinery to supress replication to a dramatically variable extent.
This phenomenon makes it hard to estimate from the HBV peripheral viral load the percentage of infected cells or the total cccDNA in the liver.
Liver biopsies show the degree of inflammatory response by the presence and density of the infiltrating cells in the stained sections.
And of course the quant surface antigen is a key indicator of the total cccDNA present, except that the efficacy of transcription and translation also determines the final amount circulating, as well as the effectiveness/speed of elimination from the circulation, a phenomenon that is ill understood at this time.
What you measure ( its serum concentration) is the end result of an exact balance between production and elimination.
Nevertheless it is our best indicator of residual cccDNA at this time.
so one of the best markers is qHBsAg that some how is related to cccDNA, is this affirmation valid also for e positive people ?
How this qHBsAg have to be interpreted in case of people under treatment and in case of people without treatment (e negative).
How can we interpret a variation (low of high) on qHBsAg ? and can this variation be related to some other markers ?
I just got my lab results, which are quite worrying. Hope to get some advice from you guys,
August '12 - hbv dna 7500 IU/ml, ALT - 12
This is quite a big jump from the July's 966 IU/ml (which was a decrease from June's 1260 IU/ml). I am trying to pinpoint why did dna increase by so much. I thought my dna had stabilized. Anyway, here are the events that happened to me last month.
In July, I had a miscarraige, so I had a D&C small surgery done (just after my July's labwork). After that I felt weak all over and had to rest at home for 2 weeks (did not go out at all). That was also when I started taking coenzyme q10, hoping to improve my health. Do you think its the coenzyme q10 that made the dna jump? Or is it just that my immune system was suppressed by my surgery, causing dna to jump up?
My dr told me that it could be my suppressed immune system that caused the dna jump. But he also said that if my immune health doesnt get back on track fast, I might experience a "flare" of the virus, and will start to feel unwell, or have jaundice. He recommends I continue with antivirals, and he suggested tenofovir now, as it is a category B drug, safe during pregnancy.
He also said that for every month I stop my antivirals and dna is still detected, I actually have to continue the medication for much much longer to reach the same stage I did. (reason he gave was because my previously not infected liver cells are now infected by the dna virus, so it will take even more time to clear those away). Is this true?? I am so worried after hearing this, and regret stopping my antivirals. :(
Anyway, I just started back on baraclude (want to finish my remaining supply of 1 mth) before switching over to tenofovir. And I do not mind being on antivirals forever, if it permits. Do you guys think im making the right decision, or is there a better way?
oh yes, I have another qn. So...if after taking tenofovir, my dna goes undetected, how will I ever know if I truly belong to the precore mutation group, (which has dna levels climbing to very high levels, even with hbeag-neg)? Im just thinking, if I wait and restore my health back, my dna levels could have just stabilised at around 1000 iu/ml, which is considered in the "immune control" phase, am I right? Is this phase better than being on antivirals, or the other way round?
Only thing is that I am too scared to wait and see. I do not want to experience flares, which I have never cos my ALT has always been at the lower spectrum of the normal range. So I chose the safest way out.
(reason he gave was because my previously not infected liver cells are now infected by the dna virus, so it will take even more time to clear those away). Is this true?
Most of us think that even with an undetectable viral load in the serum, new virions are still being produced inside the liver and some local re-infections still occur. Personally, I think antiviral drugs will enter all liver cells, whether they are infected or not. Also, it is not a matter of "clearing", but rather inhibiting replication. Finally, as hbv is not cytopathic, it is our immune response that causes injury. Your ALT numbers are very good.
you dont need to follow your hbvdna too much it really has little meaning, the bad thing is your alt normal, this means your immune system can t see the virus now and kill it
i d go for tdf and will try to stop tdf in the future to see if you clear hbv or add on intf to tdf
tdf rescues immune response lowering t regs other antivirals like entecavir may not have this effect on immune system
During pregnancy, our immune system is somewhat suppressed, possibly to protect the baby (a foreign body) from immunological rejection. A small percentage of women have permanent change in their immune system (autoimmune disorders such as Celiac and Hashimoto's hypothyroidism) after childbirth/pregnancy.
Without tdf, you may still experience virological flare during your future pregnancy. With low ALT, you probably won't have liver damage, at least in the short term. But higher viral load at delivery means higher chance of infecting the baby. So in my humble opinion, it's safer to take tdf now if you are planning a future pregnancy.
Thanks for your advice. My 1st pregnancy 4yrs ago, I stopped medication (then was lamivudine) after just abt 1.5yrs of taking it when I was planning (anyway lamivudine didnt seroconvert me to hbeag- then; probably cos I was on it for such a short period). So I had my high viral load and hbeag+, but fortunately, my son was not infected. (That was my happiest day, and I have always been thankful to God.) Thats why this time, I thought I should also stop antivirals. I'm not sure if tenofovir, a cat B drug is really safe for pregnancy as it's a strong drug afterall. But I am more worried it may affect my liver health as I really felt weak after my miscarriage, so will continue antivirals with a positive attitude.
"hbv is not cytopathic, it is our immune response that causes injury."
I am always very confused abt the immune system. Have always thought a good immune system will help to kill viruses and improve overall health. When you say its the immune response that causes injury, do you mean just short term injury, while in the long run it will help kill the virus, and hopefully eradicate the surface antigens?
This is a simple explanation, the realty is more complicated and beyond my limited knowledge.
Our immune system will try to eradicate the infection by killing infected liver cells.This causes injury and the liver will replace the lost cells. In chronic hbvers, the immune responses are inadequate to win completely. So many battles are fought and lost. The frequent and repeated liver repair processes cause scarring and fibrosis. Over time, these scarring accumulate leading to severe fibrosis/cirrhosis. So, we either help the immune system to a decisive victory by medications that boost the immune system, or we use medications to reduce viral replication and hence reduce immune responses, leading to "peaceful" co-existence.
Research indicates that it is not that our immune system is inadequate to fight the hbv, it is just that the hbv virus has evolved many mechanisms to help defeat or reduce the effectiveness of the immune response.
In recent years, scientists are learning and discovering more about the pathobiology of hbv infection and our immune responses to it. It is just that we wish they would hurry a bit.
BTW, Tenofovir is regarded as safe to be given to pregnant women in the third trimester to reduce viral load and hence further reduce the risk of vertical transmission.
Also, our immune system and immune-based therapies can control the virus through non-cytolytic and cytolitic mechanisms. And fibrosis can be reversed.
Thanks for the explaination. I think I somewhat get the picture. So all the vitamins we take will not boost the "immune system" to actually fight the hbv. But it will only control the virus through non-cytolytic and cytolitic mechanisms. Is this right now?
Regarding Tenofovir, I thought category B drug means safe to take all the way throughout pregnancy from 1st all the way to 3rd trimester? You mean theres only human trials done for 3rd trimester tenofovir safety?
Taking antiviral during pregnancy is a complex issue as two persons are involved. As I am not a doctor, I try to only report what I have read. Lam is a Category C, yet it is used extensively because doctors have a lot of experiences with the drug from women with HIV. Likewise for TDF.
I copy the following FYI:[notice the emphasis on maternal health]
Hepatitis B Virus Treatment During Pregnancy for Maternal Health
If a pregnant woman has advanced disease or the clinician opts to initiate therapy for other reasons, considerations when selecting an anti–hepatitis B virus (HBV) agent include antiviral efficacy, risk of resistance, human safety data, and pregnancy class of the drug. The choice of anti-HBV agents for pregnant women is discussed below.
"If a woman of childbearing age becomes pregnant while already on HBV therapy, the decision on whether to continue treatment or stop should be individualized based on the trimester that the pregnancy was discovered, the severity of her underlying liver disease, the risk adversity of the mother to medications during pregnancy (especially in early pregnancy), and the risk of flares when stopping the medications (Table 2). With regard to balancing the risk of continuing the woman’s HBV medication vs the risk of flares if therapy is discontinued, the rate of birth defects in the general population from 1989-2003 was 2.72 per 100 live births (95% confidence interval: 2.68-2.76), and the prevalence of birth defects per 100 live births diagnosed during the first 7 days of life (“early diagnosis”) was 2.09 (95% confidence interval: 2.07-2.12).[APRSC 2011] Although these data cannot be precisely compared with the Antiretroviral Pregnancy Registry data on birth defects with HBV medications due to the self-reported nature and limitations of the registry, the reported rate of birth defects with any tenofovir-containing regimen is reported to be 2.4% in the first trimester and 2.0% in the second/third trimester (Table 3).[APRSC 2011] This comparison suggests that there is no evidence that exposure to tenofovir during pregnancy increases the risk of birth defects; however, even babies born to women who do not take the medications can have a birth defect; differentiating whether the defect was medication-related vs due to some other factor is impossible.[APRSC 2011] Thus, treatment during pregnancy should only be continued if the risks of discontinuation outweigh the potential benefit."
Cytolitic mechanism involves killing the infected livers - there are just too many infected liver cells. Non-cytolytic mechanism involves some ways to control/reduce virus replication and/or degrade/reduce cccDNA without killing the liver cells. I myself am trying to understand more about the non-cytolytic mechanism as it is the best way to control/cure HBV. And I guess scientists are working hard in trying to stimulate/wake up/restore this mechanism so as to provide a cure.
I have an open mind on Vitamins and supplements. A balanced and healthy diet should provide all the vitamins that the body requires. In the case of Vitamin D, research indicated most people are deficient and so taking the vitamin is recommended.
vitamins and antioxidants help keep liver free from damage even if there is attack on the liver, latest research thinks fibrosis and liver dmage is due to higher oxidative stress which breaks the balance between immune attack/damage and repair.the higher oxidative stress is due to immune actiity and inflammation
most carriers get no damage despite ast/alt flares and hbv/immune activity, maybe they have less oxidative stress or a good antioxidative body system
the situation can be furthur complicated by the mutants, some types make more damage to the liver.
oxidative stress tests are available in some very good labs like redlabs.com or europeanlaboratory.nl
these are research level labs, not just commercial ones, it is good to check oxidative stress and correct it because most western diseases are thought to come from that (cancer, diabetes and so on)
i checked it one year ago while i was on heptech antioxidants and it was still little abnormal, i added liposomal vit c 1000mg daily and it got to normal range in about 3 months
to detect oxidative stress i checked anox and it was a little higher than normal then i checked mda few months later and it got to normal.
oxidative stress is a balance between your system and ox stress so it must be normal range, not higher and not lower
I've just restarted entecavir, finishing up my last 1 mth supply, before switching over to tenofovir. Should there be some overlap? Or just take the last pill of entecavir and the next day take tenofovir thereafter?
Today I went to see another Gastroenterologist Dr. just to get a second opinion.
Ok, here's what he said.
1) I do not need to be on medication at all since my DNA is not high at all (he considers 7000IU as not necessary for treatment, Only viral load above 20,000IU should treat)
2) I told him my DNA went up from 966IU to 7000IU, when it was stable before. But he said its natural for DNA to fluctuate.
3) I told him I have already restarted entecavir for 12 days. He said to stop today and retake blood test in 1 mth. (This part I was in doubt as I thought its not good to take-stop-take-stop, but he assured me its ok)
4) His reason for me not needing medication was because my liver enzymes have never been elevated, my e-antigen is negative, and my viral load is low (7000IU/ml)
5) His recommendation to me, since I told him I was plannning for a baby, was to take tenofovir only on 3rd trimester (to reduce risk of fetal transmission), and thereafter, I can decide again whether to continue with tenofovir, or stop after delivery.
I am now torn as to what decision to take. I am inclined to his recommendations for not taking medication during pregnancy, but also doubt if he really knows about hepB treatment. Why I say this-when I told him abt tenofovir, he went to flip a drug book to find out more abt tenofovir. I thought all drs who specialise in hepB should be very familiar with ALL the drugs, esp frontline drugs? hmm...so for this, I need advice from you guys. Hopefully you can help me make my decision whether or not to stop medication. Thanks!!
I am now torn as to what decision to take. I am inclined to his recommendations for not taking medication during pregnancy, but also doubt if he really knows about hepB treatment. Why I say this-when I told him abt tenofovir, he went to flip a drug book to find out more abt tenofovir. I thought all drs who specialise in hepB should be very familiar with ALL the drugs, esp frontline drugs? hmm...so for this, I need advice from you guys. Hopefully you can help me make my decision whether or not to stop medication. Thanks!![/quote]
I know what you feel. But understand most doctors have very little knowledge about HBV. Something they heard on a seminar somewhere sponsored usually by the drug company..
Researchers don't have clear answers for us.
From what you have posted yeah you are slowly relapsing. But if you want to have a baby then for sure you are better off antivirals.
So in a way your doctor is right.. with his recommendation to go on Tenofovir. Since it is the most potent drug..
But for us the best available in terms of what is approved is interferon.
I had stopped entecavir for 6months (from mar-Sept), then now restarted it again for 12 days. If I stop again, will it make the virus go mad and make resistant strains? Thats what I am afraid most. *sigh*..I wished there's a clearer way to handle my case.
So you think I should not stop medication, and continue with etv, then do the switch to tnf?
well if you can postpone heaving another baby and start doing interferon for a year you may clear the virus or have a very sustained response off therapy..
Unfortunately with chronic hepatitis B with today's drugs there is no clear cut strategies. Even with the combo treatment like Interferon + Antiviral there is really small data available. Clinical trials or lack their off only test these theories on a small number or people. These treatments are not being standardized yet. And that is a big problem. That there is lack of dual therapy strategy that has shown good results.
But interferon injections is the best way for anybody to clear hbv if you have no liver damage today given the drugs we have. With antivirals it is very low 1-5% per year.
hbvdna and alt were used a decade ago when fibroscan, hbsag quant, bcp/precore tests and so many more info were not available.
today you can choose not to treat when fibroscan is less than 7kpa and no HCC risk or young, but it makes sense to try sequantial tdf+intf to clear hbv once and for all being 40% or more the chances to clear
hbvdna and alt were used a decade ago when fibroscan, hbsag quant, bcp/precore tests and so many more info were not available.
today you can choose not to treat when fibroscan is less than 7kpa and no HCC risk or young, but it makes sense to try sequantial tdf+intf to clear hbv once and for all being 40% or more the chances to clear
sorry i forgot about pregnancy issue, at this point your best choise for you and for the new born is switching to tdf and stopping etv in 3 months
be aware most doctors just dont care to study and get updated so they are totally useless especially on hbv which changes every year with new studies, vaccine fails in more than 28% babies and it fails making invisible to tests hbsag mutations, the only way to avoid this is taking tdf before pregnancy
vaccine failure is due to hbsag mutation, so after vaccine the tests will see hbsag negative and hbsab antibody for protection and hbvdna un but the virus has mutated to the occult form which will come out many years ahead with very low hbvdna, normal ast/alt, hbsag neg and hbsab pos.this form desoite being so invisible to tests can make a lot of damage anyway, hcc and cirrhosis too because some of these mutants are directly cytophatic, they kill cells while infected
phyllanthus niruri powder is not that much effective..i am buying my medicines produced by SKM (http://www.skmsiddha.org/) which is in this business for a long time and the quality is good... again i would advise not to venture into phyllanthus niruri and wait for some more time for my results..it may not be the only one that is controlling my hbsag and dna but i am taking some other siddha medicines as well..
to the question of why indian and chinese governments are not taking steps/investing in conducting trials for phyllanthus niruri if it really has worked for HBV..(1) Allopathy doctors wield a lot of influence in the goverment (2) there is not much research materials available for siddha medicinal system. Knowledge has been passed within the families and it has been lost with the family. In some cases, the knowledge has been retained in dry Palm leaves in old literature which a lot of people are not able to interpret in the right way (3) Government is not ready to provide funds for clinical trial for siddha medicines (4) also interest in learning and practising siddha is not much.. a lof of people are studying in the hope of getting a job in a government hospital.. i can list down so many other things (whatever i mentioned is w.r.t. Indian govt).
also siddha medications are known for long term effect on our body rather than short term relief provided by allopathy medicines.. siddha medicines are targetting to improve the immune system of our body and hence act as a preventive medicine..
I understand your dilemma. I don't want to add to what I said before: it is a fine balance for both mother and unborn baby. Whatever you decide, you must be monitored by both a liver specialist and an obstetrician. I hope you can find doctors who are experienced in your special case. By all means, get second, third, fourth.. opinion until you feel confident with the advice.
we already have hbv cures, patented, with much to eran from drug makers...they are not interested to cure but to lifelong drugs to sell, so they dont market
natural cures can t be patented so there will never be an interest in this
what you get from this....governments are all corrupted and drug makers just make business so they are intrested to make drugs to sell for life, not cures of any kind.
they already sell drugs for diseases that don t exist with max profit, if making drugs keeps being a business like this the model will never work, maybe making alot of competition and stopping using patents can make benefit
Unfortunately what you read here is what most of us are told.
For instance in the US all is measured really is HBV dna, and that is how progress is evaluated.
testing for mutants, genotype is not routinely done, or health insurance approved with some patients - it is labeled as investigation procedure and not necessary.
No surface antigen quantitative test is available. No Fibro Scan.
In fact most doctors here will tell you that still a biopsy is better then Fibro Scan. So there is really no need for it.
Once the person begins to understand the level of incompetence or flat out lies (for reasons that I will list below) about treatment they were told, they have no desire to see doctors, and argue with them, so they turn to internet and herbal self medication. Which makes health insurance companies happy.
it is a flat out business - a doctor has to get his bonus checks from the drug companies from writing prescriptions and at the same time not to upset the health insurance company he works with by doing too many tests. Even If the patient needs them. So given this system how can one really treat, and experiment and try to make a difference?
really honest and decent doctor cannot simply work in this system. I am saying it as a patient based on my own experience. The costs are high the quality is close to 0. If they miss routinely acute Hepatitis B then draw your own conclusions..
Some doctors don't even care anymore what they do if it is good for the patient or not. They do what is recommended by FDA..and the treatment recommendation provided by the drug company... a safe bet to avoid a law suite just in case and stay in business for a while. Where everybody is happy and profiting except the patient if this is a serious illness. some docs yes read it from the manual how to treat hepB.
You are lucky to be living in Europe where health care is a right not a service. And where doctors are not that dependent on drug and insurance companies how and with what to treat I am told.
The kind of a perfect world health care, only is available to very rich people or politicians - which get it free also btw. The rest of us in best case scenario is how much knowledge we can gather and how much our health insurance will allow our doctor to do and also a bit of help from God.
Look at the way at how clinical trials are set up for HBV today. Take for example Gilead GS9620 - imiquimod in pills .. How many patients did they take first in their trial? Why don't they expand the criteria and take people that have taken other drugs not just ETV?
The so called researchers that work with them what do they exactly do and how many people they are helping by doing such small trials of medication that works better then what we have today?
They monitor this forum, so why don't they come and respond and answer some questions? How come the fight against HBV is so slow if they are so commited?
So you see all the research or to be exact product testing is done and set up by the company like Gilead.
They could have just give them the drug and say here.. Try it on as many as you can and reports us the results. Report the results here on this forum where members could have spread the word in their countries to patients and doctors and government officials. And these companies would still make money. maybe not as killer profits as they do these days..
So that is why we as HBV community are stuck with lack of drugs. And lack of really solid treatment strategies of what works not to suppress the virus but to cure the patient.
Because this market is dominated by drug companies from one country where everything has to bring money in order to do it - big money that buys influence and policy making.
These companies need to recover profits from all the time they put developing anti HIV agents. Which is what were are treated with really. In some way Europe is the same way they way they approve drugs.
So yes there is great hope in countries like China and Russia to provide at least the alternative way of doing things. Medicine cannot be for profit, it is emoral, it is not christian. At least they have the funds to pull something like this off now.
Because this is not working - running clinical on HBV drugs to approve them over a period of 5-7 years is ridiculous. Giving the devastating consequences chronic HBV carries for the patient and how much it raises the cost of health care overall. When there must be a simpler solution.
I see so many good reports about herbal treatment, various supplement. Why there is not trials on those? Why no one asks those wise old men in China and India that know herbs for their input?
So given the current situation, all we can do those of that know the truth about hbv treatment all we can do is share knowledge. So people can at least know what to tell their doctor the next time they go and see him and what tests they need to be ordered. That is one way of beating this system. Which i truly believe will change because people are fed up with this and they understand where the problem is.
With regard to Replicor if they have no money to bring the drug to market why don't they then put a bulletin on their web site that they are excepting donations. We will all donate. How many sick HBV folks world wide. Money can be generated if they need to. So I think it is not that.
I think we should e-mail and invite Michelle Bazinett here and ask her what the deal is. With the power of internet it is possible to raise all the funds they need and to treatment say in Thailand or other country that permits it. It is not an issue. If Replicor people are ready and have the drug and want to help funds will be there.
Stef, in my case, would you support the decision for me to STOP entecavir now (after restarting for just 11 days since my previous break in March) and try for a baby. Then 2nd trimester take tenofovir (if DNA rises to above what level?). Definitely, I will be taking tenofovir in 3rd trimester. Its just the 1st trimester that I dont wanna mess with any drugs as its the most impt period for the fetus. Im sorry that you may not have come across this scenerio, since you are not female. But Im sure there are many females like me who want to have a baby, but stick in the middle. I think Im having anxiety issues already..worrying so much!
And also, will it worsen the hbv virus if I stop now? Im more worried about mutations and resistance issues (I have been taking entecavir for 3yrs 3mths, then I stopped in March 2012, then got back again 11days ago.)
Oh, and for sure, if I start tenofovir from 2nd or 3rd trimester onwards, I will take it for a long time, no more stopes definitely. I do not mind taking for life, as long as I do not develop resistance to it.
Im not so comfortable with taking tenofovir throughout pregnancy (unless benefit outweighs risk by a lot), because, though its a cat B drug, if you take it everyday, you never know how it interferes with the developing fetus, esp the first 8 weeks when the crucial developments are taking place. My 2nd consideration is, I do not trust drug makers in some ways as after 10yrs, they may suddenly change their stand after finding some abnormalities in pregnancy women taking tnf.
good idea stef. I shld start a new thread on this.
but now, the question is whether i really need to be on medication or not.
I know for HBe-antigen neg patients, there's no clear end-point for treatment. And some guidelines suggest not starting on medication and just monitor and treat when necessary.
So now, I do not know if DNA 7000IU/ml is considered high enough to treat. This dr I just went yesterday says its low and only above 20,000IU and elevated ALT then should consider to treat with meds. But my regular dr says its a jump from previous 966IU and stable levels before, so may result in a flare (but so far my ALT has been very low fortunately)
Which is more accurate?
hbvdna is useless for liver damage, we have fibroscan today
hbvdna useless to see if you can clear hbv or if you have many infected cells, whatever the values there is no corrispondence at all
ast/alt liver damage, not at all, again fibroscan will tell
today hbsag quant is the most important with this you know the chances to clear the virus once and for all, the chances to get cured!and high alt which means active immune system especially if hbvdna is low/und
Yes, I am a mother of 2 children. But I didn't have your dilemma when I was pregnant because my viral load was undetectable and liver enzymes were very normal.
I agree with StephenCastlecrag's advice about getting third, fourth,....etc. opinions until you find a good hepatologist you are comfortable with.
Although Tenofovir wasn't approved for Hep B until 2008, it has been used on HIV patients since 2001. If there were issues regarding pregnancy, they probably would have emerged already. However, almost everything is possible and I agree it's a hard decision.
What do you mean when you say hbv dna is not impt to see infected cells, and ALT/AST not impt to see liver damage? I thought there's a corelation between hbv dna and progression to liver damage/cancer? And ALT tells if liver is inflammed or not?
You are a lucky mom! May I ask if you were on any meds before pregnancy? And were you all along HBeag neg, I presume?
My stand is not to be on meds untill I see a "flare", which I suppose is an elevated ALT. If this happens before I am pregnant, then I will start tenofovir. But hopefully, it won't, or can delay till at least 2nd trimester, where I'll be more comfortable taking meds. I am really praying all goes well..as I am one paranoid person.
Hi guys, I need your advise here. I took another set of bld work last week and here are the results.
March '12 - Stop baraclude
June '12 - hbv dna 1260 IU/ml
July '12 - hbv dna 966 IU/ml, ALT - 10
August '12 - hbv dna 7500 IU/ml, ALT - 12 (note this was done after my miscarraige operation end July. Not sure if there's any correlation)
October '12 - hbv dna 113 IU/ml (reference range <20IU/ml), ALT - 12, AFP - 0.8, all other results in the comprehensive metabolic panel are within normal range (too many to list here), liver ultrasound normal.
The lab report stated that this test was performed using the COBAS(R) AmpliPrep/COBAS(R) Taqman(R) HBV Test, v2.0 (Roche Molecular Systems, Inc.)
Performing site: Quest Diagnostics
Want to know is this result accurate? If so, why the sudden drop in hbv dna after 2 mths? I am still off medication. The only thing I did was to take vit D 5000IU, vit E 400IU andvit C 1000mg daily. Oh, and I also did chinese accupunture weekly (but that was done because I wanted to strengthen my uterus after my miscarraige. accupunturist said my "qi" was weak)
my gastroenterologist dr didnt want to put me on tenofovir. said will see me in 6mths?? I told him thats too long and he then said ok 4mths. I was actually thinking every mth! He has no knowledge of fibroscan, oxidative stress test and he still can tell me that he has consulted several other drs abt my case and all said not to treat. How? Is it safe for me to continue like that? happy with my results but worried at the same time too.
In no way should you be treated with Interferon if are planning to have a baby. because Interferon is contraindicated for pregnancy. Treatment is usually recommended if your viral load is > 2000 iu/ml (over 10,000 copies /ml) and ALT > 1 x ULN, but this is not relevant in you case as you are planning to have another baby.
Vertical transmission increases for women with very high viral load (> 10^7 iu/ml) even if the standard HBIG and 3-dose vaccine are administrated within 12 hr our birth. So some doctors would consider treatment in the third trimester for women with such high viral load.
So, look like you have successfully stopped Entecavir. You should continue monitoring in the event of a relapse, hopefully it will last for a long time. During pregnancy, however, the immune system is suppressed against potential antigens expressed by the fetus (LOL), so it is possible that your Hepatitis may re-activate during your pregnancy. Of course, your immune system will be restored after birth, so there is no need to rush to treatment. You should always consider your liver specialist and the ob/gyn.
I will try to do a vit d test elsewhere. This gastro I'm seeing doesnt think much of a vit d test and says it's not impt.
Bilirubin total 0.8
Platelet count 307,000
WBC count 5800 (how to increase this? Noticed it's a bit low. Ref range is 3800-10800/uL)
For the moment, I will not get pregnant. I agree with veteranB. Health is more impt. Pregnancy can be postponed. I will try to see if I can get a Hbsag quant test done somewhere. meantime, I will monitor for the next few months and see if everything is stable first. Do you think I should do blood work again in a month's time? Or what is the frequency I should monitor now? I am afraid of a "flare".
Thanks very much for your knowledgeable advices. I have really learnt a lot from u guys and really appreciate it. I will pray that God will facilitate the process of hepB cures and lauch them ASAP! God bless!
SO this Quest Diagnostics can be trusted as accurate lab readings?
pure melatonin 20mg daily before going to sleep can increase wbc but it is not important if they are in normal range
dont look at immune system numbers too much, it is more important the quality of immune response than the number of immune cells around
vit d is essential for hbvers, another stupid ignorant doctor just bothered to prescribe or not prescribe.....
what did you do while taking beraclude... your results is amazing... I have a HBV DNA load of 70,000,00 plus and now 4 months taking this meds and im not yet undergo a blood chem since is to expensive i rather buy beraclude to continue my medication... can you give me advice on what you do while taking this meds... thanks I'll wait your reply
can you teach us on how you prepare the phyllanthus niruri... we have this herb in our place which you can see everywhere... did you boiled it and drink or taking it as a salad?
I also taking USANA Hepasil DTX which have a milk thistle, turmeric extract and sylimarin which help liver function... I have plan to shift medication to alternative medicine which deals with herbs if Beraclude did not work for me... Thanks
Stef, can I get your opinion on this? Now that I am not taking entecavir anymore, but hbv DNA is still detected. What can I do/take to make DNA undetected again? Will u recommend alinia mono therapy? Since alinia has no sides, I don't mind to take it. Feels kinda weird not taking anything...it's ironic I know.
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