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Avatar universal

pharma vs holistic hep c treatment

Along comes this HVC after hitching a ride for about 25/30 years. Read lots on the net about past and present pharma and natural herbal therapys,side effects and degrees of success on both sides. Without being derogatory, I'll call'em the Suits and the Hippies.
The Suits have some very convincing momentum in the battle against HVC for us but at a cost, both financial and side effect prone with varying success. The Hippies seem to be gaining (by my observation from the failure of the Suits) some momentum with less costs, little to no side effects with claims of degrees of success. Both are advancing in their knowledge and help so I must add I praise them all for effort.
Non are going to disappear tomorrow, nor am I but here's my question finally. Has anyone given any particular, less invasive and side effect prone Hippy strategy to return to (full health HVC wise) or is this more often used as a last resort (as I seem to gleen) after the Suits have had their chance but left you less than satified with their end result.
(If they would only get their collective knowledgeable heads together for all our benefits.)

Theewoodman  
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Avatar universal
" Every one is so concerned about side effects of the tx, they act as though it's worse than the disease."

Many people recover from treatment pretty well, some come out with what I call "souvenirs" that are permanent but manageable. For a certain segment of people, treatment has either been extremely difficult and harmful with more distressing outcomes  OR it has simply failed. One fellow in my support group has tried treatment twice and it's failed and each time, he's come away from it with permanent health conditions. For him, treating a third time is a daunting proposition.  It frankly pi$$es me off to no end that this is ignored by those who so fervently push treatment  - these people need to be exploring alternatives to keep the impacts of existing Hep C under control.  For that matter....it's also a matter of personal choice if someone reads about the side effects of interferon and ribavirin and decide that they want to avoid treatment until better options come along and see if they can live with their Hep C instead.  That is THEIR choice, as long as it's an educated one.  Their body, their life.  They have NOT automatically sentenced themselves to death in that case if they are carefully watching and monitoring their health and are making use of alternatives to keep their fibrosis and their viral load in check.  People say there is no usefulness to keeping viral load in check but that's not entirely known - what IS known is that treating with a lower viral load potentially offers more chance of success so if one is keeping options open and trying to create optimal conditions IF they do end up having to go into treatment. I would be looking to keep viral load down as a " can't hurt, might help" approach as there are new things being learned all the time about Hep C.

There is nothing CLINICALLY proven to cure Hep C other than the known drug therapy we have today.  That is a fact.  That does not mean that there are not other things out there that improve conditions for persons with Hep C - and potentially even improve them to the point where life expectancy and the quality of life and health prognosis is greatly enhanced for persons with Hep C.  Perhaps if we explored these options more fully, it may be that CURE is not the only acceptable goal that persons with Hep C can entertain - nor should be allowed to entertain, when the current drugs are as difficult as they are with side effects that range from mild to debilitating from person to person and when the current rate of success with SOC drugs is still just under 50%. New and promising drugs on their way but still not a 100% panacea and accessibility to these drugs along with the new resistance issues to be addressed remain to unfold.  

I have thyroid issues as one of my "souvenirs".  I take daily medication. Easily manageable and controllable. Perhaps...just perhaps...we might find something that keeps Hep C in check enough to increase life expectancy and inhibit damage to the point where the number of liver transplants from Hep C is greatly decreased as well.  That isn't going to happen if the only option people ever entertain or investigate is the current pharmaceutical treatment.

Surviving Hep C is the goal....cure is certainly a great way to achieve that.  For some, that isn't going to happen and it would be nice if people can stop beating the treatment drum long enough to give a voice to those who need to discuss other options....and those who simply WANT to along the way to determining what is best for themselves in their own situation.  If treatment ends up being the best option for a person, that will become clear to them and I'd rather have the freedom to explore all my options so that I can feel some comfort with the option I've settled on after all that, knowing why what I've chosen is best for ME.
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Avatar universal
I've arrived at the same conclusion so far as Aussielee and many others here. TX, yes but in the mean time, what can I do about my liver and cirrosis while I'm waiting.

murariji;
Anti-fibrotic compounds and supporting the liver function, may be as good or better in restoring and maintaining good health as interferon is, it's not really had a fair testing.

Remember this story:

Thomas Edison failed more than 1,000 times when
trying to create the light bulb".  (The story is often told as 5,000
or 10,000 times depending on the version.)  When asked about it,
Edison allegedly said, "I have not failed 1,000 times.  I have
successfully discovered 1,000 ways to NOT make a light bulb."

With technology, supportive forums like this and collective experiences and focus, I'm sure there are ways to tap the world for the discoveries we are looking for.

Thanks all, keep it coming.
Helpful - 0
1433307 tn?1300339642
Hi,

I've been watching this thread & others on similar topics for a while now.
I also belong to another hepatitis c forum, a peripheral neuropathy forum & one for cryoglobulinemia. The members of these forums share their experiences with traditional & complimentary therapies. Many are using both. The atmosphere is very supportive. I like to come here for the latest information on what's happening in the US & to see what people who have taken the traditional route have to say & I'd like to see how those who have taken the  complimentary route have improved their quality of life. I get that "soc" is the only proven hcv cure & that some people are only out there to make a buck out of peddling snake oil but I also think there is some value in using other therapies to improve & enhance ones health. Massage, Meditation & Chiropractic therapies are all well accepted alternative treatments in our society today. So too is Mind/Body medicine, who'd of thought 40 years ago that it would be practiced  in a major medical hospital such as the Benson Henry Institute at Massachusetts General. I bet there were a lot of people who thought Herbert Benson MD was a bit of a crack pot back in the day but his theories have since been proven. Anyway my aim is to treat this disease with "soc"  whether that is soon or some time in the future when newer drugs become available in Australia & I may choose to use some complimentary therapies to prepare myself for treatment. Until then I'm interested in seeing what others have to say on the forum. will consider that it's not always what you say but the way you say it when trying to get your point across.

Best wishes to you all.

Have a great day :)
Helpful - 0
1523804 tn?1316560909
I realize the point of your comments, and mine was not addressed to you, but since this thread deals with alternatives to SOC, I was just observing that this understanding that SOC is the only cure and if you can't do that, then have a go at making do with supplements, is actually based on speculation and not based on laboratory tests, because not all the claims of cures have been thoroughly investigated.

Since you brought it up, I don't feel there IS "a big difference between the cure and supporting liver function."

Anti-fibrotic compounds and supporting the liver function, may be as good or better in restoring and maintaining good health as interferon is, it's not really had a fair testing.

There are many potential threats to our good health in our body all the time, if they are kept under control they are not a danger.
If the liver and immune system can be kept strong and  working well, we are not at risk from the effects of HCV. It is not so smart it will give up attacking the liver and go for the lungs instead.
Considering what a brilliant machine this body is, I feel it is capable of far more than we allow,  Hopefully others can shed  more light on this, and that with discussion and experience we can maximize the body's own potential to heal. Understandably is not of interest to everyone, each to his own, but let's at least have a look and talk about it.
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Avatar universal
I was not talking about the cure, but about anti-fibrotic compounds and about supporting the liver function. HCV is hard to eradicate, and I personally have never seen anybody succeed doing it with alternatives. No solid evidence. But I did meet some people who are able to successfully maintain their liver health for many years despite the virus being present.

There is a big difference between the cure and supporting liver function.
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1523804 tn?1316560909

"SOC is the only clinically proven cure.'

That may be true, but it is misleading.

It implies that only SOC actually works, and many people believe that.

If Chinese medicine, accupuncture, Ayurveda, homeopathy, cow urine therapy, pranayama, even BHT are never clinically TESTED, then they will never be clinically proven, but they are not clinically disproven either, so they cannot be ruled out.

Who does the clinical testing je me demande?

More accurate, and equally true, would be to say that 'SOC has been clinically proven to work some of the time. Other claims of cures have not been fully evaluated by western medicine/science as of today.'


Some possible cures definitely sound 'fishy' but others are founded on very sound concepts that are little researched in western medicine.

Point being, 'only clinically proven cure' is not the same as 'only cure', until all feasible, possible cures have been clinically tested.

SOC may be the only practical approach for the majority of people in the western world today, but progress is often the result of trying something different, often by force of circumstances and often in the face of skepticism.

If SOC has worked or is working for you that's wonderful, and if it didn’t or doesn't and supplements help, that's wonderful too, and if neither of those are possible and you're a neurotic, cirrhotic, pig-headed looney case, and you’re still trying to fix things, then it may all hang on how much support and encouragement your friends give you, even if they do think you're skreewd medically. All we want is the truth, and 9 times out of 10 with Hep C, the truth is "we don't know."
Points of view and opinions are partly what this site exists for, but t’would be nice if they  be served with a little honey so they be tasty for everyone.
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Avatar universal
Thank you very much for your response. Yes, you are right, arguments don't make this distinction. And this is sad, because there is a big difference between these approaches.
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Avatar universal
I believe pharma  is involved in development of various anti-fibrotic drugs. However, as evident from the long delay in PI approval, getting a new drug past the FDA is a HUGE task in terms of time, effort and cost. Over-the-counter agents/supplements that may slow fibrosis - eg by interfering with stellate cell activation or TGF-B signaling will never meet the threshold - they are not patentable hence profits are very limited and benefits are likely to be both mild and very hard to measure.

There's a good free-access review of options for  anti-fibrotic drugs and supplements out of Harvard here:
http://www.ncbi.nlm.nih.gov/pubmed/19726145
See for example the section on "Plant-derived Drugs"

Forums like this could be very useful for sharing reliable supplement vendors, supporting evidence and usage warnings. However most arguments over alternative approaches make no distinction between  colloidal silver and sho-saiko-to or ppc.
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1586675 tn?1300905095
Good Evening to all and Good Evening to you, Trish. Thank you so so much about all the info you posted. The documents I am referring to are actual case studies with patients whom hep c virus became undetectable after going through a traditional chinese treatment,  (honestly I haven't checked all of your sources yet so not sure if some links contain this but in any case that is what i was mentioning). I contacted my friends/chinese medicine specialists so they can let me know where to find such documents. Again, I will never claim "I know" and there is the possibility that I completely misunderstood and that if unable to get rid of the virus itself, chinese medicine in certain cases, can bring the viral load to zero. I made one of them repeat it twice at least. so, chances are I did understand correctly. All of you can count on me, as soon as i hear from them, I will communicate any and all information pertaining to the topic.

Have a great evening everybody,

nikita
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Avatar universal
I wonder why pharma would not be interested in this? Cirrhosis can occur not only as a result of hepatitis C, but as a consequence of many other conditions. Couldn't they make some money off the maintenance approach? For many patients maintenance is the only option, unfortunately.
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Avatar universal
>"This is not about those that can achieve SVR with SOC, it is about those that can't. "

that says it all. As background, here's an excerpt from a recent review by Rehermann on host/virus coexistence:

"continuous recruitment and death, the lysis of some — but not all — HCV-infected hepatocytes, and the secretion of inflammatory and profibrotic cytokines such as TGF-β activate stellate cells, the primary source of extracellular matrix. The portal area expands, with thin collagen fiber extensions between layers of hepatocytes. As the disease progresses, fibrous bridges form between adjacent portal areas, and cirrhosis develops. Hepatocellular carcinoma usually arises after 2–4 decades, typically on the basis of underlying cirrhosis and possibly aided by an inherent carcinogenic potential of HCV "

http://www.ncbi.nlm.nih.gov/pubmed/19587449

Activated stellate cells, not the virus directly, are responsible for gradually transforming liver tissue to shoe leather. If you can get rid of the virus, great. If you can't it makes good sense to inbit TGF-B and stellate cell activation - that's the source of the damage. HR outlined relevant research in his posts here, principally antioxidants - but it's tough going. One thing that is certain is that there will be no pharma interest in this maintenance approach  - zero stock market speculation regarding PPC sales

The irony is that those who most need help on this forum receive the least. SOC tx is no picnic but is basically straightforward - follow directions, do your time and hopefully pick up your SVR at the end of the ride. Piecing together a survival strategy if you need to continue to coexist with the virus is much harder.  
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1130586 tn?1316266292
It wasn't your question .. your right .. it was mikesimon's March 10 question ...
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1491755 tn?1333201362
I don't think it was my question.  But a worthy topic definitely.
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1130586 tn?1316266292
Thanks to the powers that be ......  there is allot of new research , clinical trials and hopefully good news for everybody infected with HCV ... on the horizon James .. there is allot more $$ being spent on R&D these days than even 3 to 4 yrs. ago ....... in the next 5-10 yrs there may be a cure-all Tx for 100% of all the HCV infected .... or not ...

I did not mean to imply there is little hope for G-3 or any of the other genotypes .... who do not SVR ....

My main point and others in this thread has been to try to open up some of the close minded members here .....  to .... lighten up on the other members who cannot achieve SVR , or cannot handle the Sx of Tx , or just want to wait for new developments in Tx ... depending on their unique situation ...

Regarding Alternative ways to support the liver ....

Threads do go off subject sometimes as we all feel strongly about this infection and how do deal with it ...

Just to let you know ...  I want to dedicate your question "When do you stop having PCR RNA tests" to it's own post .....

I think this is a very worthwhile question ...



Helpful - 0
1491755 tn?1333201362
Great news Trish, Aaron please see Trish's post for g-3 telaprevir results
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408795 tn?1324935675
Great best answer up there Trish!  When I started tx in 11/08 I naively thought that I would breeze right thru it with no problems whatsoever.  Wrong!  I have many issues that I didn't even consider, also a friend of my wife's was going thru tx and doing fairly well so b/c of that my wife pushed me and thought it should be easy for me, irritating situation.  Long story short, I was gonna have to start Procrit along with my Boceprevir and SOC.  That wouldn't be a big deal for most ppl b/c most ppl have regular good running veins and unfortunately I am not the one.  I had a big issue with the interferon and it affected my mood drastically.  All of a sudden I was living with shame for my past drug use which came up as depression (anti-depressant didn't help) and was treated like sheet at work and I happen to work in the health field,WTF!!  I would like to tx again but that is only b/c I am dealing with the issue of swelling in my legs and ankles.  The swelling didn't seem that bad prior to me starting tx but I am now a couple of yrs older and I really don't know for certain if it got worse or not.  This time around when I tx I will have to prepare for it in a large way.  I got to lose some weight and get into working out regularly before I start.  Incidentally I forgot to mention that I am anemic and I had HepA when I was a teen so my liver wasn't anything close to normal before I was infected with HepC and dx'ed in 92.  

My suggestion to all who are looking into tx is this.  If you are in very good health and you have good veins.  Tx if you want to, but personally I would put it off for as long as possible.  That said keep on top of your HepC and that's for everyone who has it.  You never know when your LFT's are gonna spike ten fold and try to take you down so the best thing to do is have regular blood panels done and a liver biopsy done every 3 to 5 yrs.  The blood tests will have to be done more frequently, work that out with your doctor.

In short when it comes to SOC for HepC, put it off for as long as you can.  Tx if you absolutely have to but if you don't have to then don't stir the pot, jmho.  HepC is deadly serious and ppl are dying to get tx'ed so don't minimize the power of the dragon.  good luck fellow Heppers!  
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1130586 tn?1316266292

Read some of nygirl7 posts in MH from the past regarding Tela/Boce ... referring to them as the new "miracle" drugs ... there are many ...

No problem ... we agree to disagree ....  

The study or clinical trials current 2010 or 2011 reference data i refer to can all be supported... if you want ... just tell me which data you don't believe or trust ... or,  you can easily find this data online yourself in AASLD , EASL , CCO , ( Clinical Care Options ) or PubMed , NATAP websites ...

It does take the time to look though ..........



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Avatar universal
Somehow my message just isn't getting through.  I want everyone that can SVR to do so.  I have never said that supplements will eradicate the virus.  They can make you feel better and improve your liver function.  This is not about those that can achieve SVR with SOC, it is about those that can't.  Is there something wrong with the way I am stating this?   I am not the sharpest knife in the drawer but I don't see why this is so hard to communicate.  For people like Joe, supplements are the only route.  If you are thinking that he can take Teleprevir and be cured, I sadly say, probably not.  People that have a poor response to interferon which has caused them to repeatedly fail TX, don't have a whole lot better chance with Teleprevir.  It is likely going to take at least 2 DAA in the cocktail to get the job done.  It isn't impossible that he could clear but his chances are nothing to get very excited about and that could be bad as far as being able to utilize that drug in a future cocktail.  I wish it wasn't so because it could be a long time before 2 DAA are available to Joe. Boceprevir is also basically eliminated for him because his hgb is too fragile.  You seem to think we have available soc  choices but we don't.  We are locked in this cell with many other non responders and people that have circumstances that prohibit them from being cured by SOC.  The supplements have given Joe,and thus our whole family, a quality of life he didn't have without them and supplied some hope.  
Best Wishes for your SVR,
Ev
Helpful - 0
1586675 tn?1300905095
HI James, if I understand your question correctly, I was referring to the HCV RNA, the Hepatitis C Quantitation which, I believe, is usually measured in IU per mL...
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Avatar universal
Part of my "Results" cut-and-paste disappeared...good results at 90% RVR and similar results for Geno 2 and 3!

"Results
• At week 4, 90% of patients receiving R7128 achieved RVR (HCV RNA < 15 IU/mL), compared with 60% of those receiving placebo.

• The mean decrease in HCV RNA was 5.0 log10 IU/mL in the R7128 arm compared with 3.7 log10 IU/mL in the placebo arm.

• Responses were similar for patients with genotype 2 and genotype 3.

• R7128 was well tolerated overall.

• No serious adverse events (AEs) were reported and there were no discontinuations due to AEs.

• AEs were similar in prevalence and severity to those previously reported with pegylated interferon + ribavirin alone.

• Laboratory safety assessments revealed no grade 3-4 changes in hematocrit, hemoglobin, absolute neutrophil count, or platelets, nor clinically significant changes in other laboratory parameters, vital signs, or ECGs
Helpful - 0
Avatar universal
I wouldn't go so far as to say the new meds will not work for G3 and I wouldn't be going around saying that G3's are " SOL".  The study you cite only covers the first 15 days of treatment and doesn't demonstrate SVR rates.  

Certainly this part of the data you've cited is not promising:

"In this study genotype 2 treatment naive patients achieved a mean 4 log reduction in viral load after 6 days on monotherapy with telaprevir. The triple combination of telaprevir + peg/RBV achieved a mean 5.3 log reduction in viral load at day 16. But genootype 3 patients only achieved a -.80 reduction in viral load so therapy for genotype 3 won't be pursued."

However, one can still SVR without getting that lovely RVR.   Telaprevir is not entirely without merit for G3's:

http://www.hivandhepatitis.com/2010_conference/easl/docs/0514_2010_b.html

Results:

Among genotype 2 patients, HCV viral load decreased dramatically in the telaprevir monotherapy, triple therapy, and standard therapy arms:
G2 telaprevir alone: -3.27 log by day 3 and -3.66 log by day 15;
G2 telaprevir/pegylated interferon/ribavirin: -4.03 log and -5.51 log, respectively;
G2 pegylated interferon/ribavirin: -2.04 log and -4.83 log, respectively.
However, fewer people in the telaprevir monotherapy arm went on to achieve sustained virological response (SVR) by 24 weeks after completing treatment:
G2 telaprevir alone: SVR 56%;
G2 telaprevir/pegylated interferon/ribavirin: SVR 100%;
G2 pegylated interferon/ribavirin: SVR 89%.

Among genotype 3 patients, HCV viral load decreased much less in the telaprevir monotherapy arm:
G3 telaprevir alone: -0.54 log by day 3 and -0.54 log by day 15;
G3 telaprevir/pegylated interferon/ribavirin: -3.05 log and -4.85 log, respectively;
G3 pegylated interferon/ribavirin: -2.38 log and -4.72 log, respectively.

Looking at genotype 3 patients, SVR rates were lower overall and did not diverge so much across the treatment arms:

G3 telaprevir alone: SVR 50%;
G3 telaprevir/pegylated interferon/ribavirin: SVR 67%;
G3 pegylated interferon/ribavirin: SVR 44%.

If I were Geno 3 and I could increase my odds of success by 23%, I'd at least be considering Telaprevir in the mix if I needed to treat sooner than later.  Certainly resistance issues need to be considered however it seems that Telaprevir for G3's is not entirely without merit.  I wouldn't classify an increase in SVR rates by 23 % as being SOL.  Certainly more challenging than the other Genotypes so far...but not quite as bleak as SOL.

Otherwise, R7126 shows very promising results so far for G3:

http://www.hepcassoc.org/news/article173.html

"In a late-breaker presentation at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD 2008) last week in San Francisco, researchers reported the data on one such agent, Roche and Pharmasset's HCV polymerase inhibitor R7128, in prior non-responders with HCV genotypes 2 or 3. This represents one cohort in a larger study that also included genotype 1 patients."

"Results
• At week 4, 90% of patients receiving R7128 achieved RVR (HCV RNA  86%), similar to R7128 + [standard of care] in genotype 1 non-responders, with an acceptable side-effect profile."

"These high response rates in a difficult-to-treat patient population suggest that combination therapy featuring R7128 deserves further exploration in both treatment-naive and non-responsive genotype 2/3 patients with HCV," they concluded. "

G3's are far from the bleak picture of SOL that you're painting when it comes to Telaprevir and PI's in general.
Helpful - 0
1491755 tn?1333201362
No one is saying you shouldn't do what's best for your liver and your life.  If herbs or a diet change help take stress of your liver that is what we all want.  My liver is stage 3 HELLO !  Why wouldn't I want to cure it ?  Ya think I lived through 24 weeks of H$LL for fun ?

What people like me are saying is there is no documented case of SVR or a clinical study that proves SVR is attainable via "hippie" meds.

If you think 50% success is bad try 0%.

Of course we hope and pray for a better day, a positive attitude was crucial to me while on TX, but it didn't lead to UND.  Those nasty shots and pills did.


If you've got a clinical study you'd like to share that proves alternative meds erradicate HCV please share them.  
Helpful - 0
Avatar universal
I have had several send me personal messages to let me know that they also are using the Hep Tech supplements and are having really good results , even more impressive than Joe's. This is likely because their livers were less damaged to start and therefore easier to heal.  I wish they would share it publicly but the word I get is that they don't wish to be attacked.  Well, if you don't think we feel like we have been persecuted on Medhelp...you would be wrong. The only reason I have ever entered in to the strife, was in hopes that someone needing help as bad as Joe did, would benefit.
I took some time off from trying though as it was really beginning to disturb my peace.  Believe me, if there was anyway we could get Joe to SVR with a standard TX, we would.  He took everything approved and complied to the letter despite having very debilitating SX.  We went through it 3 times.  Trials have not been an option because practically none of them will take cirrhotics and his platelets and hgb have always stayed too low to get in a trial anyway.  Every SOC road was blocked so there was no choice but to take a detour.  It has returned Joe to a life worth living.  Why should others in this predicament be kept from knowing this?  
I know that Hep Tech is expensive but keep in mind that they have a compassionate relief program which lowers the cost for those with a low income and that is how we are able to keep Joe on it.  If I ever am unable to get the Hep Tech, I will just go back to buying HR's individual supplement suggestions from other discounted sources like Swanson Vitamins, I herb etc. but for now I am glad to be getting the quality and potency of the Hep Tech supps. and I have much less to do to try to figure it all out.  Joe has to swallow fewer pills , which he appreciates.
Ev
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1491755 tn?1333201362
Telaprevir works form G-2, but unfortunately G-3's are SOL.

http://www.natap.org/2009/EASL/EASL_13.htm
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1574015 tn?1317661220
AND To all active members here, and those  %50 of people where SOC is not working.  To change the subject slightly.  There is HOPE!    INF/RBV combined with Clinical trial drug BMS790053 killed my virus in a 24/48 week trial . The trial was for genotype 1 and 4, in 5 different countries. I have / had  G1a.  A trial is starting soon for G 2 and 3.    I was the 8th person to complete the 24 weeks and 7 people had VL <25 at week 4 and were Und at week 10, and continued that way till week 24. We are finished!   One person had a higher LV at week 4, but responding, so they have to do the full 48 weeks. That is the best results of any new drug I know about. This is just a heads up. The clinical data will come in time.     I looked into alternate / hippy care.    I despise some aspects of big PHARMA but decided to go that route anyway.  Four days with no DOPE now. YAHOO!  In the meantime ..Look after your precious liver!   Take Care ,Pedro
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