Disease progression statistics

[mike716]

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

[Upbeat]

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

[somuchmore2]

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.

[Willy50]

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

[IAmTheWalrus]

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.
.

[pvk]

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.

  

[somuchmore2]

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.