discontinue treatment after 8 dosages

[Babylove0728]

Hello Stef2011, I need your opinion on this:
I have posted questions before regarding my concern on starting with entecavir treatment, or any viral treatment whatsoever.
Altho my dodtor told me to start with entecavir on Sept 28, 2011, I did not start with it. What I did was to drink the "miracle drink", i.e I juice 2 small apples, a carrot and a beet (sometimes potato instead of a beet) and had it every morning when I wake up on an empty stomach for almost a month. I saw my doctor on Nov,9 and she told me why I havnt started yet. I did start finally on Nov. 11 with 1 mg of etv, gave so much pressure on my nape and head so I decided to take it every 48 hours instead of every 24 hours.On Nov, 16, barely after 3 pills of etv (i.e. Nov 11, Nov 13, Nov 15), and 1month of the "miracle drink", I had my blood test.

On NOv 22nd visit with my doctor, with her not knowing what I did gave me the results:

From HBVDNA of 27,400 IU/ml in July 2011, is now 326 IU/ml on NOv.16,2011
From ALT of 31 in July,2011 is now 30
From AST of 34 in July 2011 is now 32

I am wondering what made my HBVDNA decreased to an astonishing 326 IU/ml from 27,400 IU/ml. Was it because of the 3 pills of entecavir I took or was it because of the "miracle drink" I had every morning in an empty stomach for one month (please google-search "miracle drink" and its excellent nutritional effects)

She continued to say "see, with only 3 pills of etv, look at your results". Then I told her what I did. Obviously, when I told her about that "miracle drink", she just brushed it off and tried to stop me from discussing about it and its beneficial effects. I told her that from what I have read so far, it takes at least 48 weeks for entecavir or any viral treatment to work and see results, much more I took the 1mg of etv every other day for 3 days instead of everyday before I had my blood drawn for test. And I told her "you, yourself told me that it will take a long time to see results". SHe just told me to "do whatever you want to do". I thought she meant that I may continue with etv in that cASE, I have to take etv everyday instead of every other day, because etv is to be taken every 24 hours no matter what the dosage is; OR continue with my "miracle drink".

May I have I your opinion on this. So far, I have only taken 8 pills total of etv since Nov 11 (i.e. Nov 11, Nov 13, Nov 15, Nov 17, Nov 19 NOv 21 and after I saw her on Nov 22, I took it everyday i.e. Nov 22, Nov 23 TOTAL of 8 pills.

Now I am having second thoughts on continuing with etv and just continue drinking the "miracle drink" and see what happens. Do you think I am taking a big risk here on stopping the viral treatment, altho I have only taken 8 pills of it so far?

I cant ask my doctor's opinion on this.For them it is antiviral. Its medicine. She wouldnt even listen to my "miracle drink". She told me to do whatever I want to do. So it is all up to me. What do you think? Please help. Your opinion matters and I know in the end, it is still me who will decide. Thank you.

[stef2011]

when i started in pisa etv was already taken and hbvdna was 135iu/ml.they took the resistance test at 25% population because this can check all hbvdna genes and found q215s
but this test is not reliable enough, many other mutants are present lower than 25% and since etv response was not complete there are mutants for sure which impairs etv effect.they can be lam mutants or mutants unknown to influence etv

so since the resistance tests at 5% population can t still detect all the mutants i prefered to start tdf immediately and then run the test the 6th of dec.
if hbvdna will be und the test can t be performed while if detactable it will be, but again i dont care about it too much since it can t detect all mutants 100%

ultradeep requires a new doctor request and going to rome and spallanzani lab willing to make it....to complicated, when i meet the doctors i will let the m choose for the best according to them.in the meantime i should be sfe on tdf

also consider i am cirrhosis baseline, all these considerations can be less important to all others, a mutant can be deadly for me while definitely not deadly for a totally healthy liver

[stef2011]

I am still confused with taking resistance test in cccdna. What is this test and how do u call it so I can ssk my doctor about this.

i just talk about this test to let it know it exsists but to check hbv mutations in cccdna you  need 2 type of tests available only at research centers:
one is biopsy and then direct mutants in the genes of hbv in the liver

the other one is ultra deep sequence, they amplify hbvdna in the blood and sequense all genes for all mutations

the reason i talk about this is the tests commercially available can see the mutants only when they achieve >5% total viral population but you can hve many mutations even at 1% population or 0,1% population.if  you have etv mutants or lam mutants at 0,1% and take etv you risk that 0,1% to grow over time to 50-90%

so this is just to let know the limits of normal resistance tests

in pisa they want to make normal resistance test to me for example but i dont really care too much about it since we can t see all the mutants.to have the ultradeep i should go and ask at spallanzani hospital in rome (the hospital directly run by healthcare ministry on virology) but i m not sure i can get ultra deep there.
in sept i tried tor vergata hospital in rome because i thought they had ultra deep but they didnt, they couldn t even amplify hbvdna when less than 20iu/ml

[Babylove0728]

Yes, I do have osteopenia, reason why I take caltrate, recommended by my doctor.

I am still confused with taking resistance test in cccdna. What is this test and how do u call it so I can ssk my doctor about this.

Did u have it when u startedd with etv or b4 u started with etv. Then how can u correct it if u hv resistance in the cccdna?

[stef2011]

600mg of caltrate

not indicated with vit d in hbvers unless osteoporosis or other correlated diseases present

[stef2011]

that means that all kind of resistance to all nucs, lam, adv, etv, tnf are found in naive patients both by normal resistance tests which can get only 20-25% of viral population, on ultra dep sequence more mutants are found that were not detected by normal resistance test.
ultra deep sequence is very expensive and resistnce is found in about 10% or less by normal tests so it is possible they will say these tests are not necessary at the begining.italian studies will clear if this is true or not

just my example
i had q215s/q mutation present probably not due to etv at 4 months entecavir therapy
ths is a secondary mutation that confirs lam and adv resistance, reduced response to tnf in vitro

patients with q215s are also found to have other low population mutants like lam mutants and adv mutants....

[4est]

"also resistance test should be performed before hbvdna gets und to be sure you have no mutants that make etv useless, these are lam mutants.if your doc says it is not needed just tell her that studies initaly and other countries by ultra deep sequence are showing the mutants are present naturally in cccdna before taking drugs and are not always due to the drug so the test is needed for 100% safety" - so that mean you can have a lam resistance without taking lam drug or mean that if you take lam you will develop resistance ?  

[Babylove0728]

I totally totally agree with everything you say abd have said. It looks like you have searched so much about this disease.

I am taking supplements besides etv namely: 600mg of caltrate and 1000 IUs of Vit d3; Vit B complex and Vit C,mbesides eating bitter guard or bitter melon, less red meat, lots of vegetables and fruits, and I statred the miracle juice again: 1 big apple or 2 small apples i carrot and beet. In the next week I will substitute celery for beet. I read that too much beet can harm the kidney if one has kidney stones. However beets are good for detoxifying, therefore good for the liver.Etv as we know or any anti viral treatment is released thru kidneys, so kidneys have to be taken cared of and celery and cucumbers are good for the kidneys. Juicing an apple, a carrot, celery and cucumber can only do good to the kidneys instead of harm. Carrots too are very good antioxidants. I havent tried heptech supplements.

I also read that a very low percentage of patients worsen when on anti viral meds. If I remember it right some patients can have hepatoxicity and lactic acidosis, but my doctor said, very very rarely. Companies just put it there as side effects so they will not be sued. And I read that it happens to obese or overweight patients.  

With regards to nodules that can be risk for liver cancer, why dont  you try the "miracle drink". As what I have read the "juice" can slow growth of cancer cells. Whatever it is, the juice is really healthy. What is not healthy with an apple a day, or a carrot a day or a beet or celery or cucumber a day. We cant go wrong on this one, I think. If you google-search further, juicing vegetables and fruits are alternatives to cancer treatment. It may not be FDA approved for treatment, but obviously, fruits and vegetables are really very beneficial to our health, whether one has HBV or not.

[stef2011]

You mentioned you have some kind of mild cirrhosis?

no i had advanced micronodular cirrhosis with fbroscan pick of 16.3kpa, i regressed all fibrosis in about 18 months by hepatitis technologies supplements, diet, excercise, vitamin d3.entecavir takes more than 5 years to do this and not on everybody.
reports from antiviral treatment only dont have a hige decrease on fibrosis, life style and vitamins/antioxidants can do much more.research is showing that vit d3, low cholesterol and low oxidative stress are a must for fibrosis regression, antiviral alone is much slower on regression and a very low percentage of patients even worsen (probably bad life styles/diet but research didnt report why they worsen)

now i have nodules to regress, this, when/if happens, takes about 10 years according to the few clinical cases researchers told me or may persist
anyway nodules have nothing to do with liver function, only fibrosis can deteriorate liver function.liver can adapt to work perfectly even with nodules if no fibrosis.nodules remain a liver cncer risk so it is better to regress them  although slow and difficult

HAve you tried home remedies for liver cirrhosis?
i agree and know already what is needed
googling is not safe if not double checked on pubmed or scientific institutions, then you have also to filter studies accordng to your experteese because some are just made on purpose to interfere with all drugs/remedies not patented which can take away money from patented drugs
as a general rule i just follow everything proven by research and then apply to me and mesure progress...luckily with tests and tools same or even better than those used in some studies.

another thing very important for the liver is cholesterol, visceral fat and bmi.bmi>24, high cholesterol, deficent vit d lower than 40ng/ml are all factors that may damage liver even if hbv is not present

[stef2011]

the problem is all tests to monitor response are missing with a delay of about 10years in US, i suspect this is to keep patients on nucs whatever because you can t really see anything from hbvdna and alt only

i wish you are close to borders and can have hbsag quant in iu/ml and fibroscan measured.monitoring hbvdna is totally useless because the virus replication goes on despite hbvdna und in blood and after all nucs are useless on infection and only liver fibrosis regression is an indication for their use or very high liver cancer risk

as to fibroscan it can be easily found in canada andmaybe mexico, some researcher/specialist have it in LA and new york too, you may try ask hcv community too if somebody got it

as to hbsag quant you can send samples to an indian lab by fedex, we posted address and phone numbers of this labs network inindia.we used india instead all other countries for price, quality and easy support from lab.you just need a doctor or nurse to take the blood sample and then ship by fedex, ask the lab first what quantity and type of blood they prefer

as to tests hbvdna undetactable is just to be sure not to develop resistance mutations because hbvdna keeps going in the liver, the best tests are abbott realtime which have now a limit of detection of 10iu/ml, if you find it at 6iu/ml is even better

also resistance test should be performed before hbvdna gets und to be sure you have no mutants that make etv useless, these are lam mutants.if your doc says it is not needed just tell her that studies initaly and other countries by ultra deep sequence are showing the mutants are present naturally in cccdna before taking drugs and are not always due to the drug so the test is needed for 100% safety.

Just wondering why she said that ALT might remain the same even with response to treatment. I thought if one responds to treatment, liver histology will improve, thereby ALT must improve.

alt are very poor and if they stay elevated it means hbvdna is not suppressed enough in the liver. as to fibrosis improvment is not correlated to drug only and alt only, life style and vitamins/antioxidants can do much more than drug only as you can see from my case and other cases here.fibroguard+antiviral can do much more or just vitamin d3 and other antioxidants from diet we have posted before...of course without a fibroscan you are only guessing, it is kind of blind treatment because you cnt see what it is doing

[Babylove0728]

Thanks as always Stef.

If I remember it right, I have read that etv is one good antiviral treatment for HbeAg-ve patients.

Unfortunately, USA doesnt have fribroscan testing, so doctors based their treatment theraphy from HBVDNA and elevated ALT's for 6 consecutive months.

In the beginning, Iw as just seeing my med doctor for my situation, however, when my HBVDNA went higher than 2000 IU/ml, she referred me to a liver specialist, the one I am seeing now. She did not initiate treatment until after  6months when she observed that my HBVDNA kept going up from 7840 IU/ml in April 2010 to 27400 IU/ml in JUly 2011, although my ALT has always been in the range of 29-31. I only started treatment, as mentioned this Nov 11, 2011, almost moret han a year because I have always hesitated to go for theraphy. I hope I did the right thing of starting with it, etv.

I mentioned to her about interferon. She was not so keen about it. She mentioned she manages some Hep C patients with int and has not been successful with it. Just not sure if it was mono int or combo of int and another anti viral meds.

What number is considered undetectable in Italy? My doctor told me if HBVDNA is 20 IU/ml or lower, it is considered undetectable.

Just wondering why she said that ALT might remain the same even with response to treatment. I thought if one responds to treatment, liver histology will improve, thereby ALT must improve.

Please post more data on etv theraphy for HbeAg-ve  patients.

You mentioned you have some kind of mild cirrhosis? HAve you tried home remedies for liver cirrhosis? Please google search "home remedies for liver cirrhosis". Might be of help. You wont lose anything. These are just healthy tips , what to drink and eat ; definitely no side effects, because these are not drugs. Please try that along with the theraphy that you already have started. We must all remember that theraphy only focuses on trying to stop or lower viral replication, and not to cure any infection liver already suffered before treatment. I guess these home remedies for liver cirrhosis will help and not harm.

[stef2011]

i suggest you do the same as me and all patients should do:

monitor fibroscan and US every 6 months
monitor hbsag every 6 months
hbvdna every 3 months and once und every 3-6 months
alt every 6 months

if or when hbsag reaches low numbers like 1500-3000iu/ml it will be good to add interferon and lower it faster, at 1500iu/ml you have very high chances to clear

if hbsag doesn t lower at all or increases it is better to use tenofovir.there are no clear studies on hbsag and tenofovir, only the study just published from netherland on hiv+hbv on tdf from 7-8 years and it says tdflowers hbsag
entecavir looks like no hbsag lowering on hbeag negative, they did not show data on those under etv 6-7 years, i fear they dont show because there is no lowering

they keep showing hbvdna and alt but these are useless, endpoit of therapy  is hbsag lowering or undetactabel and they are not showing, so i think etv is failing on hbeag negative...i will try to have more data when i meet researchers who have thousands of patients under these trials

[stef2011]

consider that most of the guidelines are just guesses, so do not follow them too closely, they are still too dangerous

this is something research has seen for most viruses even deadly viruses like ebola and so on:
the less immune system attack the less damage from the viruses, it is like the virus doesn t attack the host when it has no immune attack and both host and virus in many cases can live peacefully with no damage

when immune ystem starts its action but fails the virus mutates to escape immune system, in this situation of failing immune system there is  lot of damage

hbvdna cannot guide therapy and in europe it is already the less important aspect.it is liver damage to guide therapy, hbsag quantity, hbv mutants and last hbvdna when low because both reflect immune system activity (failing immune system activity) and the need to stop the liver damage
the number of hbvdna has almost no meaning, you have to read it through mutants, liver damage and hbsag, only complitely undetactable hbvdna has a meaning.conisder that liver damage and liver cancer rik starts at only 50iu/ml hbvdna.....

so new guilines will be soon treatment if there is liver damage, life long treatment until hbsag negative, best therapy interferon+tenofovir or entecavir in italy this combo is being applied already

also conider that interferon combo makes resitance impossible on all nucs and improves hbsag lowering and clearance, lambda will probably allow interferon on most patients and very long term interferon

[Babylove0728]

So far, I have read the ff:

- Most HbeAg-ve patients have low HBVDNA. I am HbeAg-ve, probably the reason why I have low number as you said.

I thought that if your immune system is stronger, then you have the capacity to decrease replication activity of the virus???

- Treatment for HbeAg-ve patients is considered when HBVDNA is over 2000 IU/ml and ALT is 19 (for ladies);  my doctor said if ALT is 2X upper limit i.e 2x19=38, for 6 months.

- HbeAg-ve patients may require life-long treatment

[stef2011]

etv is very potent and it acts on hbvdna and can decrease it even when billions in very short time
your hbvdna is only 27000iu/ml so you ll have hbvdna und by about 4-12 weeks and no resistance issues

immune system has very little activity on hbvdna and doesn t lower so fast on low numbers usually

if it was your immune system to do so it did thanks to etv and may even clear hbv, but this is not the case

[Babylove0728]

Thanks for your insight 4est. I definitely, definitely agree with you. That we should go by what our doctors say. I have thought about changing her so many times but the doctor I like work in the same clinic. At one attempt, the doctor I wanted to go to, told me to continue seeing whoever I am seeing because she would know more about my condition. But last Nov 22nd, I have requested again for a change of doctor and I believe in my next visit, I will be seeing a new doctor, the doctor that I like, who is more experienced in infectious diseases.

I  told my doctor about taking 1mg every 48 hours because I have read somewhere  on the website of the company that manufactures etv under the topic recommended DOSAGES, that people  can take 0.5 mg etv every 24 hours or 1mg of etv every 48 hours, acc to patients' condition, as prescribed by doctors.

She explained to me why she gave me 1 mg a day on my Nov 22nd visit:
She doesnt want to take the risk of giving me 0.5mg that has failed others, and they had to roll over to 1 mg to make treatment work better.

And I tried to make some research also. From one study, the 94 Asian patients (median age: 47 years old) on 0.5mg of etv initially , were rolled over to 1 mg of etv after a year, to achieve a better response, and they actually did, with no resistance after 5 years.

So right after my Nov 22nd visit with her, I started to take 1 mg of etv everyday or every 24 hours.

[Babylove0728]

Hi Stef, Your opinion is highly appreciated.

So you think the same way as my doctor that the 3 pills of entecavir lowered my HBVDNA from 27,400 IU/ml to 326 IU/ml. Etv is very potent then. Even tho I took 1mg every 48 hours as opposed to every 24 hours (before I had my blood drawn for test) which would have made it less potent.

However, I aso believe that somehow the "miracle drink" helped boost my immune system. I noticed too that when I started drinking it, the pain  under my right rib cage diminished. I cannot totally say disappear since it comes occassionally, but not as often as before I had that drink.

But being HBeAg-ve, it will be very hard for us to stop antiviral treatment once you start with it. That was actually the reason why I did not want to start with treatment in the first place. Becoming HbSAg-ve and HbSAb+ is very hard to achieve, very small percentage achieve it, as we all read about.

But on the other hand, FDA would have not approved all of these viral treatments if advantages did not outweigh the disadvantages. So the goal to achieve is undetectable level of HBVDNA, which my doctor said is below 20 IU/ml, acc to the lab their clinic uses; that's it. Liver histology should also improve whatever she meant by it. However she said that ALT and AST will probably remain the same. How does that then contradict with what she said that liver histology will improve. I thought liver histology means improvement on ALT and AST, more of ALT.

[4est]

my advice is not play poker with you doctor, if you think that your doctor is not capable or not sportive enough or not so open, ... just change the doctor, look for a better doctor and change it, but do not hide information from you doctor and if you agree on some tx scheme do not change the schema without the doctor approval.
even if some of us have knowledge about hbv we aren't doctors, and we all are watch by doctors and when we go under tx we folow the agree tx with our doctors.
if you think that 1/day of ent is too much, or you ..., you have to chalange this in fron of you doctor before and ask to go on 0.5 / day and ask about what is teh risk ... and ask if is mandatory to take each day or you can take a double doses at 2 days .... as far as I know antivirals have to be taken each day (I guess that some study was done and this is the optimum period ...)

[stef2011]

sorry i can read now all post, i ll read it leater

miracle drink makes nothing to hbv or to your immune system absolutely at 100%.hbv got down because entecavir and it must keep going undetactable, there is no high and low there is only undetactable with a meaning.hbvdna undetactable is no liver damage and hbvdna detactable, even 50iu/ml, makes liver cancer risk and liver damage

it is no joke to take antivirals and stop them, you can dye from it and you wont be the first one.you have no immune response whatsoever on hbv as all cronic carriers, when you take nucs even the non exstistent response you have go even lower and liver gets more infected (and this is perfectly normal since all the damage is immune system made, not virus), so in the moment you stop etv you have so many cells making virus that immune system attack your liver making death a easy possibility

also resstant mutants can arise as you stop it, so take entecavir life-long unless hbsag gets negative and hbsab gets positive with high titer, only then you can slowly discontinue in 6-12 months and see if hbvdna stays und

please do not make yourself fooled antioxidants and healthy life can do something on the virus, they can only improve liver health and recover damage but the virus is born probably much before humans and has adapt to immue system, different animal spieces and whatsoever....what do you think food can do to it

[Babylove0728]

Another thing is the "miracle drink" is good for any liver disease, on eof which is Hep B, besides being healthy as we eat apples, carrots, beets and potatoes on a daily basis. Once you juice them, I guess it becomes more beneficial to our body since it goes to our system right away. This so called "miracle drink" also boosts one's immune system and definitely there will never be any side effects.

I want to try this and see what happens. And if it was not the reason why my HBVDNA went down to 326 IU/ml on NOv 16 from 27,400 IU/ml in July, then I hope I can go back to taking etv.

Have you heard of someone developed resistance to etv after stopping taking it and then re-taking it? I am afraid of developing resistance to etv.

My doctor told me it is one very safe antiviral treatment that doesnt have serious side effects, that can be taken for at least 5 years for now, with very low resistance and it is just like taking high blood pressure meds.

Please help!