Hepatologist recomendation in Southen California

[veteranB]

Hi folks,

I need some recommendations of people  in Orange County or LA that are able to handle patients that want  to do Pegasys.

I have been on Baraclude for 6 years. Last year stopped it VL back to 100,000 copies in one month. So I am back on baraclude. I am e- antigen negative with two mutations in the core.

HBV Genotype A
Basal Core Promoter Nucleotide - T1762/A1764 Mutant
PreCore Codon 28 - Wild type

I am looking for an experienced doctor, who is up to date with HepB treatment information. Not an entecavir or tenofovir salesman.

Any recommendations would be very helpful

[veteranB]

If they were serious about HBV then they would do mass trials on the REP 9AC. I bet you a lot of us would volunteer and even pay for it.

[veteranB]

How about them using REP 9AC or at least trying it? It is already here but the damn FDA blocks it. What does dr.Gish has to say about that..

Near future is when? They told me 6 years ago when starting me on Baraclude, I still yet to see any light at the end of the tunnel.

They are giving us drugs that have been designed for HIV that only block viral particle assembly in blood as Steph said and have very little affect on he surface antigen themselves. While Tenofovir causes kidney damage and Baraclude causes Lymphomas..

With all the technology they got available in the US, what they are doing is not good enough. Clinical trials of better drugs like REP 9AC, Myrcludex B and Alinia proceed slow.

[djxpress]

I currently see Dr. Gish at UCSD.  He definitely knows his stuff when it comes to HBV.  I am currently on TDF until other drugs or a cure comes out.  Dr. Gish did tell me that there are a lot of promising things in the pipeline for the near future.

[veteranB]

thanks,

That is what I will show my hepatologist..

[stef2011]

peginterferon rates of hbsag clearance are 8% when hbvdna is detactable......

[stef2011]

http://www1.easl.eu/easl2011/program/Posters/Abstract634.htm


Poster Presentations

Session Title: Category 07c: Viral Hepatitis B & D: Clinical (therapy, new compounds, resistance)
Presentation Date: 01 APR, 2011

HIGH RATES OF HBSAG SEROCONVERSION AFTER TREATMENT WITH INTERFERON ALFA IN CHRONIC HEPATITIS B VIRUS-INFECTED PATIENTS WITH UNDETECTABLE HBV DNA

H.B. Yu1*, Z.H. Cao1, Y.H. Zhang1, L.N. Ma1, B. Ma1, Y.L. Liu1, Y. Jin1, X.D. Zhang1, H. Wu2, X.Y. Chen1
1International Medical Department, 2Department of Infectious Diseases, Beijing You'an Hospital,Capital University of Medical, Beijing, China. ****@****


Background and aims: The patients infected by hepatitis B virus with undetectable HBV DNA, HBeAg negative/anti-HBe positive are not recommended to receive antiviral therapy currently. However, HBsAg seroconversion is considered the closest outcome to clinical cure and associated with the good long-term prognosis in chronic hepatitis B (CHB). The immune characteristics of B cells and their clinical implication during this treatment in those patients remain unclear. The aim of this study is to investigate the efficacy of antiviral therapy and immune characteristics of B cells in those patients .
Methods: Patients with undetectable HBV DNA, HBeAg negative/anti-HBe positive and HBsAg positive were enrolled, and treated with interferon (peginterferon alfa-2a 135µg/week (n=53) or 180µg/week (n=14) or peginterferon alfa-2b 100µg/week (n=16)). When HBsAg titer300 IU/L) was set to the terminal of the therapy .Flow cytometric was performed to analyze the peripheral total B cell percentages in 3 patients who achieved HBsAg seroconversion and 2 HBsAg-vaccinated healthy controls.
Results: Of the 83 patients received interferon treatment, 26 (31.3%) achieved HBsAg clearance(n=1) and seroconversion(n=25). HBsAg seroconversion occurred after a median of 30 weeks after the treatment (range: 12-132 weeks). Eight patients had completed treatment and were followed for a median of 30 weeks post-treatment (range: 24-60 weeks). All of them sustained HBsAg seroconversion (mean anti-HBs 473.1±298.7 IU/L) during the post-treatment following up. 18 patients are still undergoing treatment (mean anti-HBs 411.2±461.7 IU/L ). The data (3 patients achieving HBsAg seroconversion and 2 HBsAg-vaccinated healthy individuals) indicated that circulating B cell percentages were close to healthy controls at baseline(range:5-7%)and were increased after the HBsAg clearance(range:16-19%).
Conclusions: Patients whose HBV DNA are undetectable in plasma, HBeAg negative/anti-HBe positive and HBsAg positive should be treated, because they can achieve high rates of HBsAg seroconversion. B cells may play an important role in HBsAg clearance /seroconversion.
Financial support: National S&T Major Project for infectious diseases Control (2008ZX10002-013；2008ZX10002-004)；863 project (2006AA02A410)

[stef2011]

And I am told it won't work for me because VL is low or undetectable.

that s a lie and you may sure them, it is the opposite those with hbvdna und have the highest chances because there is already some immune response active on keeping vl down.if i am not wrong a 2009 easl study

as you tell it it is a fraud to patients made up by isurance/doctors/drug makers agreement

[veteranB]

I wrote to Replicor about REP 9AC  to try it..

Here is what they replied with.

"We are not currenlty approved to treat patients within the USA with our drug. Our drug is still being tested in Asia where we are optimizing the treatment regimen. Once it has been optimized, we hope to be able get approval within the USA.

You can rest assure that we are doing our best to make sure we make our drug available to patients as soon as possible."

We can't even try this medication here because of big pharma monopolies.

[veteranB]

They are not afraid of lawsuits. I called an attorney  after i was dumped by Hep clinic. He was very blunt with me. And told me "what do you expect  you have a government insurance, nobody takes it these days"

That is why people like us are stuck with this. One medication obviously is not enough. Combo therapy is needed. But now even if I did all the steps and have a decent health insurance that pays. It is almost impossible to find a hepatologist to treat you. It is either baraclude or tenofovir. PCR VL is undetectable, don't worry about it. That is all they tell me. Never mind that I have developed fatty liver, that five years ago was not there on MRI scan. This means what? Baraclude is not working? Nobody tells me anything again. I requested pegasys. And I am told it won't work for me because VL is low or undetectable. When I had 246 million in 2007, I was told your viral load it to high for interferon your liver may fail.

All this is going in the world class metropolis like LA. UCLA and UCSD these are considered very good clinics. But apparently all they are interested in is doing liver transplants, rather then treating people not to get there.

frustrating...

[lila58]

I lived in your country for almost 7 years but we had to come to US.This is my first place in US and for me was a big change.Here medical field moves slow,too afraid of lawsuits.You are exactly right in all you're saying.

[lila58]

You didn't see the worst yet,I live in NM where doctors have no clue of hepb,it is verry uncommon here.I go to Europe every year to see my family and I have the tests I can't have here,pretty sad.I am my own doctor and maybe i am taking the risk not to be on treatment yet.The food is not great either but I am doing the best I can.

[stef2011]

if you move to italy and take residece you can have all medical treatments for paying just health taxes which are for sure cheaper than health insurance....of course moving here from US is too far

actually here you can even walk into a hospital and have no passport or pass to stay in italy and have medical care....i know this can drive italy into bankrupcy but i am proud that african immigrants can have medical assistance no matter they are not european or have money

as a very good example a young girl from romania needed a liver transplant and she had it in the best hospital for liver transplant in europe in tourin entering first in the list before italians, just to compare i read the news of people left to dye in arizona or close state just because they could not pay for it, that s just disgusting and crazy

[veteranB]

I seen at UCSD Dr. Hassanein before. http://www.ucomparehealthcare.com/drs/tarek_hassanein/ He has an office close to where I live. He was the one that started me on etv. Nice guy. But...their office dumped me as I was supposed to do Pegasys because of Medical-HMO insurance. I still have free peg that went bad in my refrigerator. Roche gave it to me for free before, I was supposed to start treatment, but his office Souther California Liver Center has refused to take medi-cal.

then Med--Cal hepatologists naturally have said that I don't need interferon. So a year into that crazy insurance I have just gave up. Doctors they contract don't even monitor you. And have very little to know knowledge on HepB.

Now I buy a very expensive health insurance that more or less does not restrict me that much (thanks to the news laws that a kicking in btw). All though I have a feeling that they too don't want to pay for interferon.

That is the major problem in America. The whole medical system is without ethics. And most of us patients are staying quiet about this.

What are we here discussing? "Depends on your insurance!" People need help. This is a grave disease. But in the US this is not the factor, but depends on your insurance. Money decides how much and how long you have to live. How doctors can work in this system and go along with it - beats me.

I wish the Europeans or Chinese would open the doors for so many of us that were abused by corrupted medical industry so people would get their chance to tell their story as to what kind of a bedlum is going on here. Not just with Hepatitis.

Sorry for the rant people, just I had a very bad experience with the care I received. I think animals get better care then some of us get.

[veteranB]

thanks I will e-mail doctor Gish.

btw, Why are so many of them here are not open to interferon therapy? Dual therapy antivaral + interferon. It is not that difficult btw to monitor a patient

I have a PPO coverage. Did HMO before - it is a death row road. They slowly let the virus just kill the patient while they decide if the treatment is necessary or not.

[calmama]

A suggestion:  Provided you have time to drive to San Diego and your insurance pays for it, why don't you schedule an appointment with Dr. Gist for a second opinion.  You can talk to him about your preferred treatment options and see if he is worth the drive for you.  At the same time, ask him to recommend a few hepatologists who are more open to interferon therapy in LA area.  Surely he will know more about his fellow liver specialists in LA than any of us here.

This is just my suggestion.  It will depend on your time and insurance.

[calmama]

Dr. Gist is in UC San Diego medical center now.  It's a lot closer to you compared to San Francisco, but still 1-2 hours away by car.  

[stef2011]

It is the viral load that matters.....exactly and not to cure of people, hbvdna just to fool in selling antivirals only to all

anyway hbsag quantity is even better than measuring cccdna, we have cccdna tests by biopsy at european research centers that are of course open to the patients but hbsg quant is better because it reflects both cccdna quantity and immune control over the infection.when hbsag becomes und in the blood also cccdna in the liver becomes very very low or und.

in this link there is a discussion about the labs in india, you can contact smilyboy there so that you can send the samples to test
http://www.medhelp.org/posts/Hepatitis-B/Liv-52-HB/show/1689897

or try to contact gish in san franscisco maybe they have a clinic in la or sandiego too
i also remember that gish may have hbsag quant by gilead trials soon, these tests are about twice a year so you may move for them and just have the simple tests in la and he is also about to start a trial on a trl7 activator which makes your ownbody produce interferon

[veteranB]

I know those of use here in the states a screwed. They are passively getting rid of us. It is all about soft kill in the US. They got all the technology perhaps even better then Europe (but that is all available to congressman) for the rest of us yes very mediocre care..

Here they measure success of a therapy  by viral load only. When I ask about cccDNA.. tests. I am told that nothing can act on cccDNA at this point so there is no point to measure it. It is the viral load that matters.

[stef2011]

another way some U members do is, find an expert doctor for tdf+interferon sequential treatment and send samples for hbsag quantification to labs in india by fedex (we chose india because cheap and very good equipemnt on hbv), there is a post somewhere in the community with the indian lab network willing to test hbsag sent by fedex

i know it is all complex but at the moment you have almost no way to cure hbv in US because without hbsag quant you cant know if therapy is working and if you have to keep it and how long, a blind treatment without this quantification test is impossible both for a patient or doctor (you all should get rid of your FDA which is actually preventing cures)

[stef2011]

i am going to start tdf+interferon in may but i am lucky to be in europe where you are free to choose what is best for you as therapy

[stef2011]

alinia, simvastatin and vitamin d3 are all off label add ons to improve interferon response when you start interferon.there are trials on hcv mainly for this and small ones on hbv but alinia is a orphan drug and the drug maker has no money to get approval for that, since it can be used even on 1yo it is ok to use off label it can t do any harm

[stef2011]

US healthcare is like selling......end of story, we have seen this from many US posters, what about mexico?because this is not a question of a rich country or a poorer, ghanda, china and india have all better tests and equipment not availabl ein Us but this is just a market choice because to see if you are clearing hbv you need hbsag quantification and US doesn t use because FDA doesn t want and so better makrket for antivirals, you also need fibroscan same fda story...this is all old equipemnt we have since 2000-2004 in europe

so it is just a market choice and maxico may have:
hbsag quantification with abbott architect or roches quan in iu/ml, goal of therapy is hbsag negative so it is obvious we need to check if hbsag goes down

fibroscan, to check liver damage and improvment of fibrosis

then you may get the drugs in US by insurance, alinia is lso available in mexico and cheaper

here is the link to one of the studies on sequential treatment:
http://www.medhelp.org/posts/Hepatitis-B/Add--on-interferon-to-a-stable-nucleoside--hbsag-loss-40-full-poster/show/1636802

you need 1-2 years on tenofovir, the most potent antiviral on hbv, and after having hbvdna well below limit of detection interferon add on, then you need baseline hbsag and recheck at 12-24 weeks if it goes down keep this combo until hbsag gets negative, if it doesn t at all stop interferon and keep tdf, you will retry interferon a year later on

[4est]

try to disucss with dr.  Gish about your situation, as  read he is open to discussion and sugestion (I remember that some one ask him related to  Simvastatin and the answer was yes, even is Simvastatin is not a aproved FDA drug to HVB )

ask him also regarding the Alinia and Simvastatin and see what he explain you, and also ask him about the combo treatament (if is time, or not, ...)

I don't know dr. Gish i only read about him from some of his patients.

[veteranB]

Hi, thank you..

Yeah I have heard of this doctor. I will e-mail them. maybe they can do something for me..

If I was in San Francisco area that is where I would go to get treated for sure. But I'm in Southern California about south 8hours driving distance from them. And I don't think I will be able to drive that far on pegasys for check up visits.

When you say sequential treatment this means adding another medication later or alternating the drug?

Because I go to these doctors, and some of them have no clue about this. Most say just take Baraclude. When  I ask about combo therapy I get no response.

Nobody has ever suggested to me to use peg+ antiviral. I have read only about it online. And being it the US I don't who will try this except maybe yes Gish in San Francisco. For other dudes here HepB is something rare, they say, but there a lot of people infected though.... go figure.

Over here in the Los Angeles area we have UCLA. This is a well known University in the states. They do research here. So I went to them. And I will tell you I am extremely disappointed with the attitude of their hepatalogists and infectious disease people. And their knowledge. All they say either Tenofovir or Baraclude, and don't worry about it. :)  And that is just very frustrating to hear.

I also asked about Alinia. Should I try it? Will they be willing? Answer was NO, not FDA approved for HBV, end of story.