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This forum is an un-mediated, patient-to-patient forum for questions and support regarding Hepatitis B. Topics in this forum include but are not limited to, Causes, Diagnosis, Family and Relationships, Living With Hepatitis B, Research Updates, Treatment, Success Stories, Support, Symptoms.

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How's everybody doing?

Took a needed break.  Work is still keeping me quite busy.  A few comments:

1)  Forum's very active :)
2)  Good to see cajim back posting :)
3)  Some non-English post :)  But can't read those.
4)  Not too many smurf threads :(
5)  People still treating with mono Epivir ?  :(
6)  Old regulars still here?
7)  New members should really read our health page before asking question.  It's just more productive :)

http://www.medhelp.org/posts/Hepatitis-B/Questions-from-forum-members/show/1169945
Related Discussions
22 Comments Post a Comment
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Avatar_m_tn
Hi, Steven,

Great to hear from you.

I try to contribute when my postings don't make me feel that I am pushing others in routes I try to avoid.

Best.
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181575_tn?1250202386
Hey Jim,

Welcome back to us both :)

No one is force to do anything.  They could take info here, there, and elsewhere, and make their own decisions with their own doctors.
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Avatar_m_tn
Hi Steven,

I know what you say is right: "No one is force to do anything.  They could take info here, ... make their own decisions with their own doctors."

It's just that sometimes my view and belief are so different yet proof takes so long that I feel frustrated that I am unable to help other HBVers see the point.

A case in point:  Now there is this view that a combo of entecavir and tenofovir will have 0 resistance based on data not even 10 years long.  Just look the off-shelf history of so many FDA approved drugs.  Which single one of them was not tested through the phases and years of clinical trials with FDA stamp of approval?  To see the real effects of drugs take time.

Best.
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Avatar_m_tn

hi steven,
have you seen replicors antiviral trials?
if the antiviral gets the market we are probably about to see the end of hbsag in a very high number of patients at last (and it gotta be it because all trials on hbv are being stopped, even alinia on hbv)
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181575_tn?1250202386
I learned to hold my expectations in check.  

Replicors' drug is still very early.  I think they are still in phase 2 in Asia, non human trials.

So I am more hopeful with alinia at this point, even though it may be just a rescue drug for multi-resistant patients.

It seems that these new drugs are much much more powerful, they have anti-effects on multiple virus, and HBV (as it is usally the case) goes along for the ride.  So hopeful but cautious to see how HBV reacts / defend itself and of course possible sides.
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Avatar_m_tn
Agree.
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Avatar_m_tn
as soon as i will add tenofovir to entecavir mono tx or am sure about entecavir+alinia combo i will try alinia myself if replicor drug is not powerful as on the trials.

since romark has stopped all trials of alinia but the hcv one, and started an influenza trial instead hbv trial, we will have no news from them in the future

on april i will see my doctor/researcher here in italy whose main team is in US universities, he will probably know more on replicor which has already completed one year human trial, the human trial data will be presented at the end of march as "evvidence of early rapid hbsag seroconversion on..."

One thing is for sure there is no company putting a penny on hbv new drugs trials and he was also very worried about this point last year by now he should know by the contacts among researcher why this is happening and if replicor drug is the cause

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Avatar_m_tn
Can feel your excitement about your combo.

Wish you the best and hope you would share your experience.
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181575_tn?1250202386
I wasn't aware that replicor's drug already completed one year of human trial.  That's a nice surprise.  And I really hope it becomes the holy grail resulting in the "S" seroconversion.  And hopefully replicors is the cause of other studies folding.

But you can't help but feel it's just a financial consideration by other companies.  Current antivirals are already successful in "treating" chronic HBV.  Another "treatment" may be a money loser because insurance carriers may not pay for it.  This is one of the main reason why they want you to try Epivir mono first.

Keep me informed.
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Avatar_m_tn
alrighty gangsters

hey steve . all good here

stefano, i discussed ur posts with my hepatologists on thursday.. he isnt too excited about any of it specially that a lot of this is coming from Italy. according to him, Italy being the largest host for liver disease center in the world has many new drugs and trials at all times that nothing is really a fact til it proves its worth. the trials normally takes up to 5 years and then you have tod eal with FDA approvals. in the US it might take an addtional 5 years to prove a drug by the FDA even though this particular drugs is approved in Europe. he gave me some examples which i fact checked and turned out right. he doesnt see anything on the horizon for hepB . like we always say in here is what he told me on thursday ; he thinks i will die with the darn thing but not bcz of it. so i am gonna side with steven and cajim on this one and hold my expectation to a bare minimum.

cajim, you are one great asset to this forum and you know it. everyone knows it.. it so GREAT to see you back

now as for whats new here... my doctor is doing another set of tests for me.. including an ultra sound. if the results come back as always ( normal range ) and negative DNA then i am taken off drugs. i am really scared of any flare up . he doesnt think i will deal with any flare ups but might see an increase on  DNA to the low level it was at when i started treatment about 15 months ago. for all that dont know i started treatment at some 633 IU and hbeag negative and hbeab positive.

he is gonna reapt the test in a month then three month then spaceit out to once every six months. incase of a flare up then i am back on drungs for life as it seems

wanna take ur guys's input.. THOUGHTS anyone ?
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Avatar_m_tn
Great to hear from you and thank you for your good words.

If you decide to stop your antiviral treatment, in addition to the careful monitoring from your doctor, please consider the following:

1.  Make sure you have plenty of sleep everyday, especially from 1am to 3am.
2.  Take in as little chemicals as possible: e.g. artificial vitamins, artificial drinks like coca cola, canned foods, etc.
3.  Avoid being in anger as much as possible.
4.  Prefer rough food over finely processed food.
5.  Lead a relaxed, regular life.
6.  You married?  planned sex life, once a month.

Hope they help.

Best.
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422881_tn?1257607179
Hey Steven,

I’m still around…I’ve just been busy working sun up to sun down 6 days a week. I still try to check out the forum once a week but don’t post as much as I used to.

Everything is still the same as far as my HBV is concerned… Normal ALT and UND HBV/DNA.

CURLING ALERT! Check your local listings…it looks like some good Olympic curling competitions on TV this week. I know I really don’t need to remind you since you’re just as passionate about the sport as I am. Go Team USA!


Everyone,

Agree it is nice to see cajim posting again. Welcome back cajim.

This is the first I’ve heard of the Replicor drug. I can’t find very much information about it, but from what I did find it looks interesting. Maybe if I were a duck (apparently that’s what the tested it on first) I would be cured by know. I won’t get my hopes up about it but I will remain hopeful that a cure will be found in my lifetime.
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Avatar_m_tn
Hi, NashPred,

Thank you for your kind words.

I have come to terms with my HBV and feel calm enough to help fellow patients when I can.

Best.
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751470_tn?1268502109
I was definitely happy to see cajim back :-).
I hope to be a bit more active here once my semester exam gets over tomorrow. I think I'll start with what I do best: directing people to the welcome pages ;-).
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Avatar_m_tn
Thanks, Sharp7.
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181575_tn?1250202386
This story only highlight the total awesomeness of the sport:

http://sports.yahoo.com/olympics/vancouver/blog/fourth_place_medal/post/Canadian-curler-is-five-months-pregnant?urn=oly,219941

MH:  Above is a Olympics sports story at Yahoo.
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181575_tn?1250202386
Shout out to Nash, Sharp, Berry !  Good to see you guys !

Berry:  I think your DNA will obviously go up a little bit off treatment.  I think flares are fairly common for inactive status.  It's just that we don't chance get the labs done at that moment.  I think what happens is that viral activity hits a certain level, immune system kicks in, brings DNA down lower, ALT goes up slightly, and it's a flare, but we usually don't chance do labs at that moment.  I think these type of flares are common and negligible because they are still far apart in the big picture.  So if you do catch a flare, just stay on monitoring and don't panic.  Of course all this is back by research and studies, by "StevenNYer, A. Suming, et. el.", so it's totally solid, FDA approval type material.  Good luck coming off meds.

Nash and Sharp:  Always a pleasure to see your posts.

Zelly: if you are reading this....miss you.  Hope everything is okay.
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Avatar_m_tn

i am very worried about succesful researches being stopped when they make lose money to pharma companies, alinia case and delay of combo trials is too stupid to be true, and i still read trials going on about lam or adefovir which are absolutely useless.
unfortunately i have known researchers being stopped in many cases, not hbv or very serious illnesses, but this happens for sure in the medical field at every level.

for example the team of researchers on hbv here in italy do not trust guidelines from conferences 100% because in that circus you have mostly researchers interested in patients but also all big companies trying to make their best profits


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Avatar_m_tn

i don't follow doctors but well known internationally team of  researchers and one hepatologist very close to research field, this since i was 18een inactive carrier (now i am 40yo) so every choice i make is quite safe (the team of researchers is very close to HR point of view on antivirals but use only interferon+etv or tdf combo, they are still waiting for toxicity 5 years trial with etv+tdf combo).
they both do not trust FDA they just listen to everything and then filter according to their studies and apply guidelines but always according their point of view not FDA or guidelines poit of view.
FDA is too close to big pharma companies and we all know they do not make patient interest 100%.

trying alinia in combo with entecavir when complitely und and with very low hbsag is not very dangerous especially because this drug is not directed to hbv but the host, so resistance is not an issue.trials will never take place for alinia on hbv because there will be no pay back because replicor will probably take all market in a near future and also other big compnies on hbv market now will not help this.

of course i would do alinia+entecavir combo only when complitely und and low hbsag titter and under control of the researchers to be safe and not on my own complitely.they will not agree on this combo but they will keep checking all blodd tests.
fortunately cccdna blood test is available to all in some centers in italy and also sensitive hbsag titter is available everywhere so it is easy to check what happens with the combo when complitely und.

resistance will not be an issue because alinia is not directed against hbv, it is free of sides and can be used for babies even 1 year old for diarrea (diarrhea), the chemical formula of alinia does not interfere with other chemicals so interference with entecavir shouldn't be an issue.

the use of replicor drug is all related to the human trial results:
if 55% will be the hbsab seroconversion rate in 28days or even higher in the following months, no sides at all and no reistance at all (it is not directed on hbv), the point of view will be different from antivirals and meds seen until now and long trials will be less important.
in any case the development of this drug starts in 2003-2004, there are also earlier studies so we are in line with normal trials.it doesn't make a lot of news since replicor is not a big pharma.
it will not have an easy road since it can make quite a lot of damage/forune in the pharma industry, it is active against:
Hepatitis Viruses HBV, hcv, Respiratory Viruses/flu viruses, Respiratory syncytial (RSV), Human metapneumovirus, Herpes Viruses, Cytomegalovirus (CMV), Varicella zoster (VZV), Epstein-Barr (EBV), Human herpes HHV-6A and 6B, Immunodeficiency Viruses, Friend leukemia, Biodefense Viruses, Ebola, Lassa fever, Marburg, Vaccinia (smallpox surrogate), Mousepox (ectromelia), Hantavirus, Hantaan, Crimean Congo Hem. fever, Rift Valley Fever, West Nile,Yellow fever, Dengue, Tick born encephalitis,
Western equine encephalitis,Venezuelan equine encephalitis with no sides, too good to be true....
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751470_tn?1268502109
Wow! Thank you Stefano for all this info!
Though I am not a doctor, I still like reading medical papers. I know that the latest medical papers are hard to come by: Big Pharma is not the only game in town - there is also what I call "Big Paper" working closely with Big Pharma to make sure we are made to pay heavily for each and every little thing. In spite of this, if you happen to have access to papers written based on these research findings can you please post it here, or email it to me privately?

Of course, I will make some effort to find these papers on my own, but if you happen to have these papers, it will reduce my effort :-).
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422881_tn?1257607179
Thanks for the info! VERY interesting post.

I was aware of Alinia, but this is the first I’ve heard about the Replicor drug and it sounds very promising. Please keep us posted about what you hear in Italy.
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Avatar_m_tn

i am very sceptical because about 10 years ago i had a client who was researcher and she found 2 compounds working for teeth osteroprosis, they were free of sides and human trial cost was only about 4000dollars, her director was also a national politician, well she ended with a law prohibition to go on even paying with her own money and even with help of politics.after the second time she was stopped she changed job and stopped research.i do hope that medical research is not like that at every level

my own doctor/researcher presented data that showed cirrhosis is reversable about 5-10 years ago, he did biopsies on hbv+hdv livers who responded to interferon and probably seroconverted to hbsab, he said that at conferences they said biopsies were false (he did biopsies so he knew they were not false at all).

the lam/adefovir circus plus the very late tenofovir approval.......Anyway i do hope that in our field of hbv everything will be studied and we will know what works and what doesn't
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