I don't think they really know. HCV is a failrly recent discovery. Most people that have it are in the range of up to about 30 years. Anyone before 1989 is a guess because they couldn't test for it before then.
I am guessing that I had it for about 30-35 years before treating recently. My Biopsy said stage 3 about 7 years ago.
Of the studies I have seen on this issue (many of them are from 2005, 2003) there are too many unknown factors to be able to predict exactly who will progress to cirrhosis without treatment. And now with the current treatments many people of would have progressed have clear themselves of HVC. Such as...
* Age of patient. (older = faster progression)
* How long have they had the virus.
* Amount of drinking and drugging over the years.
* Grade of liver inflammation over time.
* Genotype. Subtype.
* ALT and ALT level history.
* Coinfection factors.
* Genetic factors? etc. etc.
But here is some info to give a general idea.
The Natural History of Hepatitis C Virus (HCV) Infection
Stephen L. Chen and Timothy R. Morgan
International Journal of Medical Sciences
ISSN 1449-1907 www.medsci.org 2006 3(2):47-52
Progression of Liver Fibrosis
In the setting of persistent hepatitis C viremia, the rate of progression of liver fibrosis varies widely. There have been extensive studies focusing on the natural course
of disease progression from chronic hepatitis C to cirrhosis, HCC, and death. The liver biopsy is the gold standard for the grading and staging of chronic hepatitis
C. The activity of liver disease or grade, is gauged by the number of mononuclear inflammatory cells present in and around the portal areas, and by the number of dead or
dying hepatocytes. The structural liver damage, also known as fibrosis or stage, is variable in chronic HCV infection. Fibrosis implies possible progression to cirrhosis. In mild cases, fibrosis is limited to the portal and periportal areas. More advanced changes are defined by fibrosis that extends from one portal area to another, also known as "bridging fibrosis.”
Cirrhosis develops in approximately 10% to 15% of individuals with chronic HCV infection. There are external and host factors that can increase the risk of progression of liver disease. Multiple studies have shown that chronic alcohol use is a major external risk factor for the progression of chronic hepatitis C to cirrhosis and HCC. Host risk factors include older age at time of infection, male gender, the degree of inflammation and fibrosis present on the liver biopsy, coinfection with human immunodeficiency virus (HIV) or hepatitis B virus (HBV), and comorbid conditions such as immunosuppression, insulin resistance, non-alcoholic steatohepatitis, hemochromatosis, and schistosomiasis.
Table 2. Risk Factors for Advanced Progression of Liver
Alcohol consumption ( >30 g/day in males, >20 g/day in females)
Age at time of infection > 40 years
Degree of inflammation and fibrosis on liver biopsy
Coinfection with HIV or HBV
Alan Franciscus, Editor-in-Chief
The term cirrhosis is derived from the Greek term scirrhus and is used to describe the orange or tawny surface of the liver.Chronic hepatitis C infection can lead to liver damage, through the development of fibrosis (scarring) tissue in the liver. After years
or decades of constant assault by the hepatitis C virus, liver fibrosis can become so extensive that the architecture of the liver is altered as a result of excessive scarring, development of small nodules, and changes in liver tissue. This is called cirrhosis. As cirrhosis further develops, scar tissue replaces healthy liver cells and the ability of the
liver to perform its many functions is impaired.
It is important to remember that the majority of people with hepatitis C do not develop cirrhosis. Hepatitis C is a slowly progressive disease and only about 10-25% of people with chronic hepatitis C develop cirrhosis, but this process usually takes many years or decades.
Thanks to everyone who posted a reply on this topic. All the info helps in making a decision.
Re Tallahasee's post, I made it clear that my hep MD already told me not to treat now and to wait. If anything, I'm trying to find convincing argumemts for treating, not for not treating. And so far I haven't found them. With less than a 30% chance of eliminating the virus (more like 20% I think), and probably a better-than-70% chance of never developing cirrhosis before I die of old age, not treating now seems like the best course, although I haven't made any decision yet.
Dr. Dieterich's advice is just another opinion, nothing more. I don't recall seeing his name on the "Spokesmen for God" list. The U.S. MDs who are involved in drug trials want everyone to treat so that there are more guinea pigs for the trials and more drug sales by the companies paying them huge sums to conduct those trials. So please don't tell me I should dutifully close my mind and blindly do what I'm told. If I was that type, I'd just not treat at all like my hep MD says instead of looking for more info here.
So, yours truly is still collecting information, trying to think objectively in the face of prejudice and pseudo-science, and generally biding his time while working out a good supplement/nutrient/food strategy.
I heard this on a Vertex webcast. I believe that it came from the current issue of hepatology, or some professional publication but it was THIS MONTHS, at this point maybe last months issue (I posted it in an alcohol thread but I can't remember the specifics).
They claimed that the old saw about "most will die with HCV not from it is a notion which needs to be reviewed. It was based on a review of the demographics of the HCV infected population (keep in mind that approximately 2/3rds of us are currently likely undiagnosed) after 20 years. Only a small amount died; maybe 5% and 16% were cirrhotic.
Fast forward a decade. The article was about a meta-analysis in which many studies were combined in an effort to get a snapshot or what the HCV infected population looked like after 30 years.
The median age of death was 55 years of age.
After 20 years of infection the rate of cirrhosis was 16%
After 30 years of infection the rate of cirrhosis was 41%.
The death rate has more than doubled in the past decade.
Vertex has made reference to a different study which suggested that given enough time all HCV infected people will end up with cirrhosis; it's just a question of time. Sorry that I don't have links to either of these studies.
Sooooooo the stats are discouraging.
Now some good news. I've been told that they expect something like a cure within about 5 years. There are many new compounds and therapies that are making great strides. I believe there was also good news on a vaccine in development. Perhaps the outlook is gloomy if you look into the far future IF we don't treat. There is a lot of evidence which suggests that we won't have to wait long however.
--- you may have 80% of SVR prediction and be unlucky and fall into 20% of re-lapsers/ un-responders.
You never know your response, until you try it.
I would suggest, treat for 3 months and see if you respond (and if you have at least 2 log viral drop). Also, you don’t know your tolerance level to the treatment, until you try it.
I was always pretty lucky and tolerated well my Interferon treatments.
I was diagnosed in 1995 (was 26 years old) - received degrees, grew professionally and personally and never knew that the side effects can be an obstacle in living your life.
Unfortunately, I was a non-responder -- zero!
I only was responsive to Infergen -- I was on it from 1998 - but I never achieved a SVR until I double dosed daily Infergen (see Magnum's horror Infergen story) for the straight second year of treatment. I was given only 10% chance to SVR.
Well, now, 1 year later, I'm still UND -- however, since I was a so difficult case -- I was told that I still did not achieve a SVR status-- my Dr. will give this status (hopefully) at 2 years post treatment status.
All I want to do is to encourage you to treatment -- you will never know your response, until you try it.
I was in clinical trial at Mayo in '96 that helped establish the interferon / riba therapy. 5 million units injected every other day.....now they coat the interferon with a glycol to make it one shot a week and time release.....UND since then. We are still a few years away from an RX therapy - but there are trials going on that promise a lot.....enroll in a trial or do the therapy.... but don't put it off very long - even if you are asymptomatic there is fibrosis and other damamge going on........
I am one of those that did progress so the topic has much interest for me. They are working on (possibly have) a drug derived from cumerin (the Indian spice) that actually halts and sometimes reverses fibrosis. Problematically the major drug companies dont feel the profit margin is "high enough" to warrant development...and further research.......
I agree with Tallahassee.
You stats going into Tx mean Jack. The only thing thats important is how you are responding to the drugs.
You may think you have only a 20-30% chance but if you RVR then its 85-90%.
In your shoes i would consider treating and if not UND by week 12 stop as the svr rates head south if not UND by then unless you extend.
I didn't actually look at my decision to treat or not treat quite the way you are. I looked at it that I could certainly wait, being Stage 1, Grade 1.
And then I looked at it from the perspective of .. suppose I treated and it didn't work the first time? How long do I want to wait to treat the first time to find out how it goes and how much time do I want to have left when I find that out?
Then I looked at it this way next....suppose the disease DID progress quicker and I was forced to treat...at what point in my life would treating be inconvenient? And seeing as I was 46 and had plans for the next 20 years of my life that I didn't want to get interrupted...and WOULD get interrupted to take one year out of my life if I had to stop to treat anywhere from 5 or 10 or 15 years into that next 20 years...I figured I knew what my life had happening right NOW and I could fit treatment in NOW and I wasn't sure I could if I was forced into it at any time in the next 20 years.
Then....I looked at my health condition NOW. And I was pretty darn healthy at 46 with no complications of any kind. And I considered if I could ensure that would be the case for the whole next 20 years...and I couldn't. But I did know my health was good enough now.
I also looked at where my kids were at now. And if they were at a place where I could go through treatment and they'd be reasonably okay. And they were. But couldn't guarantee that would be the case at any time over the next 20 years.
And then I looked at what it would be like to go through treatment now and if I could mentally handle it. And I decided I could. But didn't know if I could at any time in the next 20 years.
And then I looked at the treatment drugs and did I think I could handle them, all things considered...if I was up for the battle. And I was.
And could I handle the cost? Well my drug plan covered 80% of it .. and I could deal with the remainder 20%. Couldn't guarantee I'd have drug coverage in the future. (Now I know the drug companies seem pretty generous with helping out but still...)
And...for me personally....could I handle continuing a dating life and bringing up HCV at "opportune" moments...not really. I just wanted that little albatross gone. And again...worked better for me to have it gone sooner than later.
And really...I just didn't want to run out of time. If I could do treatment now and it didn't work...I'd know. And waiting on better drugs....well, that seemed more for people who had less options than me. I'm a risk taker and I'll take that 40 - 50% odds of success as a Geno 1.
The one risk I wasn't about to take.. is that I'd had this disease pretty damn sure for going on 23+ years based on my two known risk factors. And the risk I wasn't about to take was that, after having this for 23+ years, that I'd not accelerate as I'm getting up there in years to be having this disease. I'd read that the bell curve goes up after you hit 40 years....went to a presentation by a Hep doctor who treats AIDS patients also and he confirmed it .. and here I was at 46 years and 23+ years of the disease. I took those odds on the cure over those odds that I wouldn't get worse too quickly.
Decided I had a helluva lot of control over my today when it comes to treatment...and not a helluvalot of control over my tomorrow when it comes to treatment. And well you know how the story ends cause tomorrow is start of Week 16 for me.
That was my OWN decision making process. More about where I could fit treatment into my future life best if I ended up having to do treatment. Someone else could look at that entirely different and come to different conclusions. But those were MY ducks.
I had a particularly low expectation of SVR being a TP patient, etc. But, like Trish, I didn't see the situation becoming more favorable or controllable in the future. It was possible, but not very likely. I decided to treat immediately and deal with what follows.
So far, I have no regret for that decision.
I was previously disappointed in the "you'll die with this disease, not from it" approach and advice. This led to cirrhosis without a tx option, HCC diagnosis and transplant. I guess it doesn't matter what happens to 75% of the people in the end, only what happens to you. I am not at all convinced that the statistics are accurate given the nature of the disease, etc.
That is how my ducks lined up, anyway. I hope whatever you decide will be right for you.
I'm not sure when I got this...sometime between the early 70s and the Mid 80s....
I didn't have a clue until Jan.08. I found out I have cirrhosis. I didn't have the option of waiting on tx. In fact, now I have the worry of "what if this doesn't work"? WIll I have the time to try another treatment? I doubt it.
If you decide not to treat now, one thing I'd advise you to do is, take good care of your liver and have yourself checked often! Don't allow yourself to get in the shape I'm in today. It's a sad state of affairs my friend.
Good Luck to you whatever you decide to do.
I wonder how many are dx'd already with cirrhosis...probably alot of us...
my friend bill who just died im sure had cirrhosis when he was dx'd about 6 years ago... he was about 48 then so prob was infected about 30 years prior iv drug use of course... he only last 6 years im sure becuz he would not stop drinking/drugging
"I was in clinical trial at Mayo in '96 that helped establish the interferonInterferon alfa-2a/ riba therapy. 5 million units injected every other day.....now they coat the interferonInterferon alfa-2awith a glycol to make it one shot a week and time release.....UND since then. We are still a few years away from an RX ...
I was also in the same clinical trial in 1996 (in Gainesville). I'm glad that you're UND! For me it didn't work --- at the end of 48 weeks I still didn't have even 2 log drop.
The studies you mention I believe are considered controversial since they go against many studies that do say a small minority of those with hepatitis c will die of it. I believe the study that predicts nearly everyone will eventually get cirrhosis was from Japan and I read it wasn't reliable. Many studies like the Irish women cohort found after 20 years these women had remarkable little liver damage and almost no cases of cirrhosis. Also the Japanese study said something like 70% of those with Hep C will get cirrhosis if they have it for over 60 years! I get nervous when any company that has a vested interest in treating patients with hepatitis c, even Vertex which could be making the first drug in a long time that will actually shorten treatment time, quotes statistics that result in scaring people to treat. I believe the last statement you mentioned might be true if you read all the new drugs in developement and how quickly some of them eradicate the virus.
Your question led me to to think about previous discussions about 'progression,' and I thought you might find the below article relevant. It underscores the concerns that (1) progression to fibrosis/cirrhosis is NOT linear and (2) the longer (or older) the infection, the faster the progression. IMHO though oftentimes "stage" seems to be the deciding factor for treating or waiting, the variables of age, weight, etc. are valuable to include into the decision-making process -- as a geno 1 my husbands 'a priori' 40-50% chance of cure has been reduced to 25% by age, weight, and progression of disease.
(Article below was posted by community member 'willing'.)
Progression of fibrosis in advanced chronic hepatitis C: evaluation by morphometric image analysis.
Hepatology. 2007 Apr;45(4):886-94. PMID: 17393526
"In our study, we found that in 245 patients with paired biopsies adequate for morphometric analysis, the amount of fibrous tissue increased on average by 58% over the 48-week period of the study.....Even though our patients had been treated with potentially antifibrotic agents, the findings in this cohort are quite similar to those in the small groups of untreated patients reported by Manabe et al. and Kage et al. Extrapolating the reported data, Manabe et al. found an average increase in fibrosis of approximately 52% per year in 16 patients, Kage et al. found 55% per year in 25 patients, and we found 58% per year in 245 patients, despite the differences in patients and in the baseline levels of fibrosis.
This implies that in patients with chronic hepatitis C, the average amount of hepatic collagen doubles in approximately 2 years, and if this is true at all degrees of fibrosis, then the fibrous tissue may actually increase exponentially rather than linearly. Although there are clearly differences between individuals in the rate of progression of fibrosis, a doubling of the amount of collagen every 2 years could partly explain the apparent acceleration of fibrosis in older individuals who presumably have had the disease for longer time. Only by direct measurement of fibrosis within a sufficiently large cohort does this become apparent, because histological stages are neither a continuous function nor a sensitive measure of this type of change. In the current study, we examined fibrosis progression in a cohort of patients who had already proved themselves rapid fibrosers. ....
Progression of fibrosis leads to cirrhosis with its complications. In patients with advanced liver disease, one might expect a relationship between increase in fibrous tissue and increase in portal pressure or decrease in synthetic capacity of liver, but this was not found in the current study. Only weak correlations of laboratory tests that reflect portal hypertension and hepatic synthetic function were seen (Table 6), no correlation with clinical decompensation, and no significant change in mean test values (Table 5), despite the fact that the mean collagen content of the cohort increased by 58%. This suggests that factors other than the absolute amount of fibrous tissue play an important role in the clinical and laboratory changes in advanced liver disease or that the pathophysiologic effects of increased fibrosis lag the increase in fibrous tissue. The architectural distortion that accompanies nodular parenchymal regeneration as well as shunting of blood through vascularized fibrotic septa may be of equal or greater importance than the amount of scar tissue. Similarly, the mass of functioning hepatic parenchyma may be more important than the proportion of parenchyma replaced with scar tissue. Therefore, in the evaluation of an individual patient, the histologic diagnosis, based on the combination of architectural changes and amount of fibrosis, may well be more important than the amount of fibrosis alone."
Thanks for the stats, Willy. You're right, that news is definitely not good if it's correct. Frankly, though, it's kinda hard to believe that the cirrhosis rate is up to 41% after 30 years. That's an over 150% jump from the 16% rate after 20 years. But anything's possible. And maybe it's true that the disease progression forms a bell curve. Maybe after 20 years it goes into overdrive. It sure ain't encouraging.
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. But ya gotta have hope.
If you ever find the URL or a link to that article, I'd sure appreciate having it.
Thanks for the further info. Glad to hear you finally SVRed. I hadn't heard of Infergen until now. I'll have to look into it.
My major problem is that I'm more or less dependent on what my doctors at the hospital here in Buenos Aires decide. I don'y have independent choice in the matter. My current hep MD has decided I should wait. I can change docs, or argue with him, but it ain't easy. This is the only place I have medical insurance, and the hopsital knows it.
If puch comes to shove, I will go back to the States, although I'll probably have to pay for everything there out of pocket.
So, although testing tx to see if I respond sounds like a good idea, I may not have the option to do that, at least not right now.
The drug companies aren't seriously developing ANY alternatve medicine for HCV, so far as I know. Only the Japanese are working on it. But I believe in it, myself. Surely, between milk thistle extract, cumering, PPC, naringenin, etc. there must be a way to stop the liver disease from progressing, even if the virus is still circulating.
Hi, CS. I agree with you. But there are conditions here in Buenos Aires that people don't have to deal with in the States. For example, my hospital doesn't yet have a viral load test that goes above 850k or below 500, so monitoring is a problem. And they don't do 4-week checks for RVR, which is a relatively new thing. Last year, the supply of tx drugs was interrupted (believe it or not) and a bunch of people had to stop tx too early. And not all the medicines for side-effects that are available in the States are available here. So opting for doing tx now, in my situation, is a lot heavier choice than it would be if I were back home.
There is a study in Medscape www.Medscape.com/viewarticle/554637_4 That states most people with hepatitis c who will get cirrhosis will at about age 65. Those women with non genotype 1 who got infected before age 37 on average won't get cirrhosis until age 89! Better news!
I like your reasoning. 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. And I've had so many problems with my hospital and the MDs there that I'm not at all sure I want to be dependent on them as my support for tx. Plus I am alone, as well as in a foreign country (where, admittedly, I speak the language and have a coupla friends). Also, as per my post to CS above, the conditions for treating here are not the same as in the States.
But this is definitely the thorniest decision I've ever been confronted with in 65 years. It's a skull buster.
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.
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"
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;
"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.
"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.
(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.
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?
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.
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.
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.
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.
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."
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. ; ) "
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."
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.
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."
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?
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.
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!
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?
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.
Lets see now. 50% will not clear the virus. Are they all doomed?
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.
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.
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
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.
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.
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.
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.).
"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."
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!
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.
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...
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.
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;
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.
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.
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.
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
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
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
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.
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.
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.
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
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