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475555 tn?1469307939
Disease progression statistics
Does anyone know where I can get some statistics on how many people with hepatitis progress to end-stage liver disease, particularly with reference to genotype, age, ALT/AST, etc.?

Thanks!

Mike
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475555 tn?1469307939
Well, I'm 64 and I'm still F1. Of course, I don't know when I was infected, so I don't know how long I've had it.

Does the genotype affect the rate of progression? This is the first I've heard that. Does anyone else who's following this thread have info about genotype vs. progression?

Thanks for the URL, Bel.

M.
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475555 tn?1469307939
Hi, Brent. I was particularly interested by your post,  but I'm not sure I understand what you said. And I beg forgiveness beforehand for asking you what may seem like dumb questions.

You weren't diagnosed HCV+ until you already had cirrhosis/HCC and needed a transplant, is that right? Or did you make the dicision not to treat and then progressed to cirrhosis?

Also: Are you treating now for the HCV-infected transplant? Or have I completely misunderstood your post?

I certainly agree with your lack of faith in the official statistics. I think the MDs and researchers are stumped on this one and don't have the guts to admit it.

In any case, I hope you read this and will answer it as I really am very interested in what you have to say. You're the first person with a transplant that I've heard from.

Mike
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475555 tn?1469307939
Thank you for your post, Texas. I think you are a brave person, and I am betting the tx works for you. In any case, it will probably stop the disease from progressing any further and maybe even roll it back some. At least that's what I've read.

Mike
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Here goes....trying to break it down;
". Frankly, though, it's kinda hard to believe that the cirrhosis rate is up to 41% after 30 years"
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I'm simply reporting.  Vertex used the study as a means of selling the need for their product.  As I mentioned in my post, it's problematic projecting cirrhosis when 2/3'rds of us are still UNdiagnosed.  That being said, they do already know the dynamics of diminished immune response with age.  I bring it up merely to point out that liver damage may increase dramatically with age.

The Vertex webcast is no longer available but I listened to it twice.  The article referenced was from the April or May issue of Hepatology.  This journal requires a subscription to be read immediately.

Here is another however;
http://www.medscape.com/viewarticle/554637

"Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection."

These studies may not reflect the truth but I'm not making them up.  ; )

Vertex has also referenced a study (possibly french) which asserted that given age and diminished immune response with age that cirrhosis was inevitable given enough time.
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"That's an over 150% jump from the 16% rate after 20 years."

The HCV death rate has more than doubled in the past 10 years.
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(on a more optimistic front....)

"It's also hard to believe they'll have a real cure in 5 years. They've been working on it for a long time and are still way off."

1)  First of all, that was told to me by a respected hepatologist;  I merely believe them.  They could be wrong but I think there is evidence to suggest that their opinion is well founded.

2)    http://www.hepatitis-central.com/mt/archives/2008/05/hcv_cure_associ.html
May 30, 2008  

HCV Cure Associated with Early Drop in Viral Load
Australian researchers find that the suppression of Hepatitis C viral load within the first month of beginning treatment is a good predictor of defeating the virus - regardless of co-infection with HIV.

(you see..... we are virtually already there today with Telaprevir.  80-90% of people who do triple therapy achieve an RVR.  This is with a current drug in trials, not something that is yet to be developed.  Can we imagine that the other new compounds in development could also be better or could be used in concert with the Vertex compound?  I don't see this as a stretch at all.  Vertex may combine their protease inhibitor with a polymerase inhibitor this year.  I'm bullish on that outcome too.)

So much for treatments.  How about a vaccine?
http://www.medicalnewstoday.com/articles/110236.php

This one reduced the viral load 95% in one population.  Still a bit early to say but lots can happen in 5 years.  An awful lot is happening RIGHT NOW.

best,
Willy






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475555 tn?1469307939
Thanks for the interesting article.

M.
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475555 tn?1469307939
Hi again. Well, I see you're a stickler for the facts, like me, so I'll try this one out on you: How can anyone say that 2/3rds of HCV+ people are undiagnosed? It's not logical. If the rest of the population is not yet tested, how do we know what the real percentage of infected people is?

I agree that it's already been proved that the immune system loses its ability to fight microbes with age and that the loss accelerates after a certain age. As a matter of fact, my hep MD told me that he saw my A2 inflammation grade as a positive, as it shows that my immune system is still working well. Of course, that could change abruptly.

You wrote: "http://www.medscape.com/viewarticle/554637

"Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection."

These studies may not reflect the truth but I'm not making them up.  ; ) "

I did`t think you were making them up, Willy. Sorry if something I said sounded that way.

However, as regards the above conclusion, the phrase "irrespective of the age at infection" puts their conclusion into the BS box, as far as I can see. The NIH consensus report in 2002 says the majority hadn't reached cirrhosis after 20 years infected. So the age at infection (at least as regards time infected) obviously does have a bearing on progression to cirrhosis.

By the way, the NIH report also states that only a minority of HCV infectees with cirrhosis end up needing transplants. Now, the percentage may have gone up but the basic fact remains: not everyone with cirrhosis has decompensated cirrhosis and needs a transplant. As a matter of fact, there are studies that show that it's mainly the people who continue mistreating their livers whose cirrhosis progresses to end-stage and need a transplant.

I'm glad you're so optimistic about cures and vaccines. But I remember all the similar reports of breakthroughs in the '90s about HIV cures and vaccines, and there still aren't any. Probably never will be. Man's powers are limited. We may like to think we're omnipotent, be we're not.

Mike
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Sorry...I hadn't noticed that you'd written me.  I don't intend to be argumentative.  I don't know the answer.  I'm just saying that according to some information out there the rate of cirrhosis may increase with age and diminished immune response.  I wholeheartedly agree that Vertex will use those studies which further it's cause.  I think that it's valid however to use the most current information on the subject since what is true for people in their first 20 years of infection my not be a reasonable premise for predicting what will happen in 30, 40 and 50 years.  The stats that I used were compelling.  That doesn't make them correct.  : )  When we talk about this we should use very current infomation.  I agree that it may vary in communities and in sexes but overall diminished immune response due to aging may bring ever increasing liver damage and mortality

For what it's worth I just got a biopsy....... and I am a 55 years old guy and I am a1/6 using Ishak staging.  I don't know how long I've had the virus but it could be over 30  years.(and also maybe not)  Were I to guess though, I'd venture that my damage will progress faster in the upcoming years.

In a way......in spite of the unhappy news I'm suggesting that it may be a mute point; many of us will be cured in the relatively near future.  Just my opinion.

best,
Willy
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233616 tn?1312790796
sorry someone is trying to make this decision for you.

the stats are changing every few months, so what was supposedly a firm statistic may not be when the next double blind comes out.

During the time I've treated my stats went from 50% down to 0% then to 3% and now back up to 20%. It all depends on how current the research and how well it was done.
Even at 20% chance, I would not undo my choice, because at stage3/4 there's no waiting...once you reach critical mass...you treat or lay it all down.

But there is pleanty of research going on as far as antifibrotics go.
It's just not well discussed in this forum. We have discussed many natural antifibrotics
http://www.medhelp.org/posts/show/346752
however I was reading just today about the role of TGF-1 and a new drug in phase 3 trials. It won't be too long before reversal of fibrosis will be used concurrently with chemo, or maybe even in place of chemo, until a more reliable chemo comes along.
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233616 tn?1312790796
good primer on this:

http://www.medscape.com/viewarticle/573024
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Mike; I'm on your side.  I'm just providing a point of view.  I may be wrong; it's just food for thought.  -W
__________________________________________________________________

"so I'll try this one out on you: How can anyone say that 2/3rds of HCV+ people are undiagnosed? It's not logical."
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W----Agreed; that's why you'll never see complete agreement on the actual number of USA or worldwide infected.  Even so they are able to extrapolate a reasonably close number based on the projected rate of infection of Vets, nosocomial infections, first responders, dental, medical, cosmetology infections etc.  Remember; they had no proof of the existence of HCV but they could still tell that it existed.  There are a large number of undiagnosed people; no point in haggling about the numbers.  I was one with no symptoms and still have none.  If I hadn't have tried to get life insurance and gotten a medical check up I'd still be undiagnosed.  My point of mentioning the undiagnosed was to point out that it makes predicting outcomes less certain when the majority are UNdiagnosed (if that factoid is indeed true).  Do they have the exact same rate of progression as those who had symptoms and WERE diagnosed?  
_____________________________________________________________________

"These studies may not reflect the truth but I'm not making them up.  ; ) "
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W-----It's not that anyone is suggesting that.  I doubt myself.  I had to go back and check to see if it was something that I'd dreamt up or misinterpreted.  I've been wrong before.  ; )    And will be again.
_____________________________________________________________________

"The NIH consensus report in 2002 says the majority hadn't reached cirrhosis after 20 years infected."
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W------- The newer data and studies may suggest an increased speed of liver damage progression.  The data that I heard said that a large group did progress in those 10 years which followed 20 years of infection.  Both studies can be correct.
_____________________________________________________________________

"But I remember all the similar reports of breakthroughs in the '90s about HIV cures and vaccines, and there still aren't any. Probably never will be."
--------------

W----But there IS a cure for HCV.  It currently stands at about 45% for the toughest to treat genotype.  The Vertex trial has proven an increase in 20% SVR rate over SOC in Prove 1 and Prove 2.  In addition it seems to even have a success rate for past non-responders (in prove 3) which are currently regarded as virtually impossible to treat successfully with SOC.  I'm not talking about something that could be; it's something that IS today. I just think that these things bear somewhat on the origional question, but are getting a tad off topic.  I provided some statistics which were kind of dark.  I also tried to provide some information which provided some hope for people.

My 2 cents; take it with a grain of salt.

best,
Willy
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mike:  "If I could figure out my own priorities and get my own ducks lined up, I'd probably be able to make a decision one way or the other, like you did. Trouble is, I can't figure it out. Not yet."
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Well...you will.  In your own inimitable "mike716" kinda way.  I found it kind of amusing to read past the sentence I quoted above to see a few "ducks" swimming there ......  got a pro and con list on your wall yet?

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338734 tn?1377163768
Sorry for late response. I didn't make my situation clear. It was like this:

In 1999/2000 I was diagnosed with HCV, liver biopsy showed early stages and moderate inflamation. TX was not recommended or offered. I was advised that I would probably die with the disease and not from it, and told to get yearly blood work and come back for another biopsy in 5 years. This decision to wait for the disease to progress before TX turned out to be a bad one..

In 2005 I returned for bloodwork and biopsy. The results were Stage 4 (cirrhosis) and elevated AFP indicating HCC. Too late to TX for HCV, imaging found 3 cm tumor identified as HCC. I was referred to TP clinic.

Now with a new liver, I am TXing for the HCV. If I had done this when first diagnosed, I may have saved my self having a transplant and left a donor organ for someone else.

I hope my anecdotal experience is of some help. It certainly colors the way I look at this decision.

Brent
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I found the most amazing stst mentioned in the medscape article I and others have quoted wasn't that most will get cirrhosis at about age 65 despite length of infection, it was the AMAZING conclusion that women who are genotypes 2 and 3 aren't on average expected to get cirrhosis until age 89!!!!!  If this is true it should make that population EXTREMELY happy!
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I have bridging fibrosis and have had it for the past 8 yrs despite all of my failed attempts at clearing it with treatment.  Even though I am a female, I have no natural estrogen due to an early total hysterectomy and I'm on Estrogen only replacement.  I can't say anything about statistics but I feel that if I don't get SVR in the next 5 yrs or so, I'm looking at having cirrhosis.  I've already been told that once.  The only thing that's kept it at bay are all these treatments.  I was infected in or about late 1982 and I'm 47.   My biopsies have never shown any improvement in my fibrosis.  I have a resistance built up now to Interferon and Riba when used alone.  So, I don't know about the statistics.  Maybe I'm an anomaly or something?

Susan
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Just wondering, are you genotype 2 or 3?  It stated that it was women infected before age 37 who are also non genotype1 who won't on average get cirrhosis before age 89.

Barry
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Humm
            Lets see now.  50%  will not clear the virus.  Are they all doomed?   I think not.   These studys are all over the map.  A lot of vested intrest.  What about the the % of people who have developed more damage from the drugs than the virus could ever cause.  This is crazy.  Talk about studies,  how about the 1999 military report to congress.  Its all in the Genes.  Most will handle the virus some will not.  

                                                                                                Ron
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338734 tn?1377163768
Lets see now.  50%  will not clear the virus.  Are they all doomed?
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There are currently retreatment options for those who relapse or fail to respond. Also there are trials available that offer some hope. I figure, even if I treat now and fail, I am no worse off than if I do not. The doors to the other options will still be open, for the most part, and TX improves liver condition (usually) regardless of SRV, which will buy more time to wait for the miracle cure that may be around the corner.

Upbeat - I am interested in the 1999 military report. If I can't find it, I would ask you to send me a link or something, if I may.

Brent
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I was a genotype 1A/1B, but somewhere along the way with all the treatments, I cleared the 1B and was left with this stubborn 1A.

Susan
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We have something in common Susan!
My first genotyping in 2000 showed IA/1B.A geno test last month showed 1A only.
Like you I have treated multiple times.Three times as non responder ,once as relapser,twice with good response but ribavirin intolerance resulting in dose reductiuon.
I have ceased current treatment and am waiting for Telaprevir.I don't think we 'cleared' the IB,I think the other strain just became dominant over time.
My fibroscan teading is 9.5 kps but I have enlarged spleen and evidence of reconstructive nodules on ultrasound and MRI.Biopsy in 2003 was Ishak three.My LFTs are persistently normal.I believe I have well compensated cirrhosis Child A.
Any members with similar profile please message me if you would like to chat.
p.s I am male age 58 infected at age 28.
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http://www.bloodbook.com/hep-vet.html

Chapter 6      Clinical Course


a study of 8,568 U.S. military recruits who had a blood sample collected and stored between 1948 and 1954, 0.4% had antibody to hepatitis C virus (anti-HCV).23 As in recent military populations, HCV infection was more frequent in nonwhite race/ethnic groups. Among 26 recruits with HCV infection, there was no increase in mortality or liver cancer during over forty years of follow-up. Other studies have provided mixed results, indicating both favorable and poor long term prognosis from chronic hepatitis C virus infection.24-27


                                                                                                         Ron
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475555 tn?1469307939
Thanks, Merry. I hope the antifibrotics are approved real soon. If us F1s could get a proven antifibrotic regime going, we would have less worry about progressing.

M.
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475555 tn?1469307939
I appreciate all your help with this very much.

Mike
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475555 tn?1469307939
I am making life-size photos of all the major MDs supporting the "Everyone's Gotta Treat Right Away" thesis and the "Don't Rush Into Things" thesis. I'm gonna paste them on my wall and throw darts at 'em. The number whose vital places I hit most, I'll subscribe to the opposite theory.

Can't be a worse way of making a decision than any of the others, huh? And at least it has the advantage of being fun.

Mike
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You're so funny!   I feel like I want to hit a punching bag sometimes.  I get so angry over some of this stuff and then, I realize that everybody has stuff!  And my getting angry doesn't accomplish anything at all except to make me feel bad, which doesn't help me out any.

Susan400
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476246 tn?1418874514
ROFL.   It's good to see you back!

Marcia
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475555 tn?1469307939
That's a real bad story you tell, there, Brent. I am so sorry that happened to you. And I am most assuredly going to take what you relate into serious consideration. I think I'll bring it up at my next meeting with my hep MD and see what he says. Maybe Dieterich and the rest who advocate immediate tx for everyone are right, and my MD is living with bad past info and statistics.

M.
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Estimation of stage-specific fibrosis progression rates in chronic hepatitis C virus infection: A meta-analysis and meta-regression.
Thein HH, Yi Q, Dore GJ, Krahn MD.

University Health Network, Division of Clinical Decision‐Making and Health Care Research, Toronto, Ontario, Canada.

Published estimates of liver fibrosis progression in individuals with chronic hepatitis C virus (HCV) infection are heterogeneous. We aimed to estimate stage-specific fibrosis progression rates and their determinants in these individuals. A systematic review of published prognostic studies was undertaken. Study inclusion criteria were as follows: (1) presence of HCV infection determined by serological assays; (2) available information about age at assessment of liver disease or HCV acquisition; (3) duration of HCV infection; and (4) histological and/or clinical diagnosis of cirrhosis. Annual stage-specific transition probabilities (F0-->F1, ... , F3-->F4) were derived using the Markov maximum likelihood estimation method and a meta-analysis was performed. The impact of potential covariates was evaluated using meta-regression. A total of 111 studies of individuals with chronic HCV infection (n = 33,121) were included. Based on the random effects model, the estimated annual mean (95% confidence interval) stage-specific transition probabilities were: F0-->F1 0.117 (0.104-0.130); F1-->F2 0.085 (0.075-0.096); F2-->F3 0.120 (0.109-0.133); and F3-->F4 0.116 (0.104-0.129). The estimated prevalence of cirrhosis at 20 years after the infection was 16% (14%-19%) for all studies, 18% (15%-21%) for cross-sectional/retrospective studies, 7% (4%-14%) for retrospective-prospective studies, 18% (16%-21%) for studies conducted in clinical settings, and 7% (4%-12%) for studies conducted in nonclinical settings. Duration of infection was the most consistent factor significantly associated with progression of fibrosis. Conclusion: Our large systematic review provides increased precision in estimating fibrosis progression in chronic HCV infection and supports nonlinear disease progression. Estimates of progression to cirrhosis from studies conducted in clinical settings were lower than previous estimates. (HEPATOLOGY 2008.).
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475555 tn?1469307939
"Other studies have provided mixed results, indicating both favorable and poor long term prognosis from chronic hepatitis C virus infection"

I'll say they're mixed. "Mixed up" is maybe more like it. Who does these so-called studies? Who controls them? Is this science, or the numbers racket? "Hey, Vito, what's da odds on F4 at fifty? Ya handicappin it? Yeah, yeah, I saw dat story in the Pamona Hepatitis Scratch Sheet, we put dat in there ta get the odds down, sure. Okay, give 'em twenny ta one, but I don't wanna hear no krap from da losers, ya unnerstand me, youse guys? Cause if de odds are fixed it ain't my fault, I'm jus runnin da book."

M.

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It's all a mystery but everything will be revealed in time - if we're just patient. Mike
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475555 tn?1469307939
Gee, I wouldn't know what to do without a Markov maximum likelihood estimation method and a meta-analysis. And boy am I glad that the impact of potential covariates was evaluated using meta-regression. Of course the estimated annual mean stage-specific transition probabilities were based on the random effects model. What else?

So, the prevalence of cirrhosis after 20 years is 16%, 18%, or 7%? That sure is good bad news. Or bad good news, if you like.

I sure gotta hand it to those researchers for providing "increased precision in estimating fibrosis progression". Yippee!

M.
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That is better than I usually see. That is why I posted it. Since we can't really know how it is going to go we may as well look at favorable information. We might feel a little better. I hope so anyway.
Mike
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Thanks for posting that, mikesimon.  Although I don't understand the details, it appears to be positive news.  Can anyone explain the numbers?  For example, if the estimated annual mean transition F0>F1 is 0.117, is that saying that 11.7% of the people with F0 today will be F1 in a year?  Or, does it mean that it will take eight to nine years on the average to go from F0 to F1?  Just wondering...
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I agree no one knows after 30+ or 50+ years.

In my case I was told about the 20% but then ramped from stage I to stage IV quickly.

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If you don't mind my asking, how long exactly did it take for you to get from I to IV?  Did you have any 'symptoms' along the way?

I'm very curious because I'm a stage 1 as of my Sept 06 biopsy, been infected 30+ years, have an opportunity to get into the telaprevir trial, and am having great difficulty deciding what to do.  

Thanks for any personal information you might be willing to share.

  
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338734 tn?1377163768
I think the researchers are putting very precise numbers on the data they have. It still doesn't paint a clear picture, or at least the picture we want to see.

An old saying is, "Measure it with a micrometer, mark it with chalk, and cut it with an axe!"

Nowhere is this fallacy more evident than in the attempt to bend general statistics to an individual case, precise CI's notwithstanding. There are so many things, known and unknown, in each individual case that can work against the odds.
.
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I presented some stats, just because I thought they were compelling.  The problem with loking at the picture is that we must rely on statistics, records and assumptions and they can all be bent a little to provide a sometimes a contrasting portrayal of fact through different interpretation of "facts".

Here is a current article which suggests that things could be getting better;

http://www.hivandhepatitis.com/2008icr/ddw/docs/060608_b.html

I'm no scientist but I wonder how well they screened people in 1994? (from where the earliest of these stats origionated).  The sad fact is that if the data is faulty, then the conclusion reached may also be faulty.

When I was first suspicious that I had HCV I went to visit my a doctor.  I told them I had elevated liver enzymes and that it was possible that I had HCV as I had a few factors of transmission risks in my past.  I had to argue with the guy to test me (he thought my enzymes were too low to merit an elisa test.  When he got the results he failed to mention to me that I had tested "reactive" for HCV antibodies.  I only found this out later, 7 months later, when the CDC called me.  How on top of HCV were doctors in the 90's?  Probably even less schooled than my doctor was.  I really wonder how much you can trust some of these articles.  In a sense, the only thing we can really get a handle on is our own health and liver staging.  

IF we care for ourselves we might expect different results than the aggregate of people who didn't know they had HCV.  On the flip side, the problems experienced by Brent are really chilling.  One never knows whether the damage progression can move so quickly or also whether biopsy interpretations can also play into the equation.  I've heard a few people express that all slides are not interpreted the same, leading to what can appear to be a rapid shift in staging over a few years.  

More questions raised than answers sometimes....

best,
Willy
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OK. Below is a little history on my stuff.

Likely first infected 1972/73.
Diagnosis 1998 while buying more life insurance.
STOP are alcohol (prior I would have 8 to 12 beers on weekends)
Biopsy 1998 0/2.
Treated with interferon-riba but non-responder.
At this point heard and thought oh well only 20% get cirrhosis.
Second treatment peginterferon-riba but again non-responder.
Biopsy 2003 2/3
Discussed progression from 0/2 to 2/3 and realized it happens.
In 2005 through 2006 I was followed-up with 6 months blood, ultra-sound and one CT.
Early 2006 Fibro-Metavir score indictated F2-F4.
In early 2007 I had a major life threating event of grade III varices bleed.
Many worked hard and saved my life ( along with the help of my Lord) while in ICU.

So, I think 10 years from 0/2 biopsy to where I am at now is quick.
Current no need for another biopsy the watch now is all about MELD score factors and liver cancer via regular MRI.


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I have heard the same story of rapid stage increase after treatment.  I sometimes wonder if the treatment may have something to do with it.  Just thinking out loud.  I don't have a clue.

                                                                                                                    Ron
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475555 tn?1469307939
These histories from Brent, somuchmore2, and others about a decision not to treat followed by more-or-less rapid progression are frightening. I'm going to translate them into Spanish and force my hep MD to listen and give me a reply, the next time I see him. I'm very concerned that he and the other hepatologists here in Buenos Aires are judging things by old, bad information.

Re biopsies, I've read a lot of articles that say they can't be trusted. It's not just that different people with different experience are analyzing the biopsy samples, but the very nature of a biopsy - a very small specimen of the liver - makes it untrustworthy. An article in the February issue of Hepatology on a new test, FibroTC, is especially interesting for the light it throws on this point, in regard to the often non-homogeneous nature of liver fibrosis, which makes biopsies appear seriously unreliable. Here's the URL: http://www.ncbi.nlm.nih.gov/pubmed/18098299?dopt=Abstract

By the way, got a copy of that article from the authors andI posted an image from it on my forum webpage, if anyone wants to look at it. It's the multi-colored graph. Click on it to make it bigger (or just go to http://www.medhelp.org/user_photos/show/8507). The image shows a FibroTC analysis of an HCV-infected liver that has four different stages of fibrosis in it. What good would a biopsy be on that person's liver? Depending on where the needle went in, anything from F2 to F4 could be diagnosed.

Re upbeat's post, I believe there is evidence that treating HCV runs the risk of powering up the virus if it isn't eliminated. It's the old "what doesn't kill you makes you stronger" idea, and it's as true for microbes as it is for humans, I believe. It's always dangerous to treat and not cure. That's why they tell you not to stop taking antibiotics before finishing the box, even if the infection you're taking them for has cleared up.

I don't really know how interferon and ribavirin work, on a molecular level, but the suppression of viral genotype breakouts is not the only concern. There's the problem of the drugs pushing the present genotype into a more virulent mode. Viruses have different virulences (power to cause cellular harm) just like bacteria do. Normally a microbe doesn't evolve a higher virulence than infection/transmission allows, on the principle that if it is so virulent that it kills its victim before he or she transmits the infection then it dies off with the victim. But taking drugs can alter that equilibrium. And the evolution of HCV is super fast. It has a huge reproduction rate.

I think a lot of interesting discussion has come out of this thread and the forum in general on these questions, particularly the treat/wait thing. It's too bad there isn't more being done by research to solve them, like coming up with a really good non-invasive liver damage test. As long as the medical community sticks to their age-old biopsy belief, we aren't going to make much progress.

Mike

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everybody's got an opinion

me-contracted hepc in 1974 settled down-raised a wonderful family-worked hard-was not a stranger to the evening bottle

hep c discovered '97-quit drinking-stayed in very good physical shape-thought f-it the bad stuff only happens to people who ignore the wall scribblings.
2006- wham! i had known for a year or so that my platelet count was way down (result of hep c) and discovered i cannot go on treatment even if i chose to and i gained 20 bloated pounds, felt as if i'd faint walking up stairs and basically thought it was the beginning of the end. (this after at age 57 running 3-5 miles at a good clip and working construction full time and feeling fine)
i am now 59 in week 10 of treatment and as i hold my breath every week hoping my blood counts allow me to stay on tx. (for me the side effects are very tolerable-just bit of fatigue and headaches)

so-i guess -to quote yossarian- there's another country heard from
quantity/quality? who knows

i wish you well-say hi to duval
scoop49
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Recent studies suggest that chronic infection with HCV will almost invariably result in cirrhosis. It is the time that this takes that varies. For those people who develop a chronic or long term infection (between 70-80% of those infected with HCV) around 20-30% will develop cirrhosis within 20 years. For some it may be quicker but for others it may take up to sixty years so they may well die of unrelated diseases beforeha
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475555 tn?1469307939
Hi, Scoop. Sorry it's taken me so long to reply to your post, but I've been layed up with the flu for the past week.

Your story interested me a lot. I've got a coupla questions, okay?

First, what were your test scores (ALT, platelets, PCR, etc.) in 97 when they discovered you were HCV+?

Second, how low were your platelets in 2006?

Last, how did you get your platelets back up again so you could go on tx?

Glad to hear your holding up good with minimal sx. If I run into Duval at the tango salons, I'll say hi to him for ya.

Mike
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ill have to get back to you on some of the older blood counts
but i can tell you that platelets were not an issue until approx "04-'05 (approx 30 years after contracting hep c)
then platelets fell alarmingly down to 50 to 60 counts
they would not start me on tx so i was in the 'tween zone of not quite unhealthy enough for transplant.
platelets continued to vary but were up two months running to 75- 80 early this year and i started tx 4-18'08. since then platelets went from in the 60's to 50's then at week 7 to 29. now (staying on tx) there is at least a temporary hole at high 20's to mid 30's (they will now go slightly below 25 at this hospital.
reason? don't really know- have always been in good physical shape-jog etc. i did go from one glass of wine with dinner to no alcohol at all and stopped taking allergy pill and aleve daily.
alt #'s were never real high-(maybe mid 80's?) on combo tx are now mid 30's
just got your message today- good luck
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I have no stats to contribute - just wanted to say thanks to all for an extremely informative discussion :) .  I've learned a lot.

Andromeda
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Anyone who is interested in fibrosis progression should do a search for Thierry Poynard at PubMed, google, etc. No one has researched the topic more thoroughly than he has. Besides a huge volume of work as a principal investigator, you will often see him cited by others in their abstracts, as well.
Mr Liver
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For what it's worth...
Someone ask/said in a female with type 2 or 3, they would not get cirrhosis till they were 89years old...on that topic...
I am a female type 2 with cirrhosis at 50. Good general health.  Not overweight.  Had this over 30 years....maybe closer to 36 years.



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The stat I quoted was from a medscape study. It stated that ON AVERAGE(Not everyone unfortunately) women with genotype non 1 who got the disease before age 37 would not get cirrhosis until age 89. I listed the study URL in an earlier message on this thread if you would like to read it. Actually according to the study most people who don't fit the aforementioned population ON AVERAGE will get cirrhosis at about age 65 whether male, female or genotype 1, 2 or 3. I wish the onset of cirrhosis at year 89 had been true for you as well.

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475555 tn?1469307939
Thanks!
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475555 tn?1469307939
Thanks for the pointer!.
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317787 tn?1473362051
While old this was a very good port.  Thank you all for your contributions
I "think" I got HCV in 1977, 30 years later when dx I was going into cirrhosis
I think treatment sooner rater than later is key
Dee
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