looking for research.....

[willows]

In fear of being deleted, I am wondering if anyone has found any research on the advancement of liver stages and grades after 20 years, 25 years, etc.  I have a biopsy scheduled in Oct., but am trying to get a timeline formed in my head.  It has been 5 years since last bx, so also want to get prepared!

Willows still on the road

[jmjm530]

Modify/scratch the sentence about "not progress to cirrhosis at all", because a quick check could not find studies go out more than 20-30 years.

[jmjm530]

Retrospective studies show 25-30 years as typical progression rates from infection to cirrhosis. Women, on the other hand, epecially if infected at a younger age, seem to do a lot better, and in fact some studies show they might not progress to cirrhosis at all, but not sure how far out those studies go. Heavy drinking, especially binge drinking, seems to cancel all benefits of being female and can acclerate progression of fibrosis/cirrhosis.

In lieu of treatment, best thing is scheduled liver monitoring using multiple sources including needle biopsy, fibroscan, blood markers, physical examination and procedures like endoscophy when warranted. Most reliable seem to be needle biopsy and Fibroscan.

I was infected 38 years ago, and somewhere around stage 3 when I started treating 2 years ago.  Social drinker, 1-2 drinks per week if that, rarely more than 2 drinks at a time.

-- Jim

[ChrisDDD]

I don't know if you're referring to Willows or me, but maintenance has been suggested for me by my local doc until I developed the retinal bleeding, and now he has ruled out ANY interferon for me ever, including maintenance.  If I don't get into VX-950 for non-responders, my big-city doc may allow me to do maintenance.  I'm just not sure the benefits would outweigh the side effects.  That's a good point and something to keep in mind, though.  I want to get RID of the damn virus!

[wyntre9]

Thanks all for this discussion.  It helps newbies like me get more perspective on
the virus.

Best of luck, chris.  You too, Martian and Willows.  And keep posting, please.  

[najeen]

Have you tried maintenance?

[ChrisDDD]

I'm sorry that your experience has been like mine, really, because I think mine sucks.  I thought I would be enlightened and cheered up by reading some blogs by other HCV posters, but instead it was more depressing and frustrating because, wouldn't you know it, they all have treated and all are clear.

I obviously have the same problem in that I can't MAKE my local doc let me into the VX-950 trial, but hope very much that the doc in the big city will let me in.  Then I have to hope that my eyes hold up, but I just think they will, which is why I'm so angry about being put in the position of having to commute to this large city for treatment instead of getting it right here at home.

If for some reason the doc in the big city doesn't let me into the VX-950 trial, I may check into a HepC doctor that was a frequent lecturer on a site I used to visit, as she boasts (and I believe she can back it up) a 43% cure rate even for people with cirrhosis.  She seems able to cure virtually anyone with this disease due to her willingness to deal with sides by prescribing rescue drugs.  Of course, there's no info on the site as to whether any of her patients lost their vision.  At times I try to be philosophical about this whole thing and just think, "Well, it just isn't meant to be," and that maybe the treatment will do more damage than good, but that's just not me.  My personality is more one of if I can't get what I want from one doctor, lawyer, etc., I'll go to one who will give me what I want.

I'll keep you in my thoughts.  It's good to know there's two sets of toes instead of just one digging into the side of that cliff!

[willows]

Your experience is what I hope to "make" happen for me.  My doctor is still reluctant for me to retry tx, but I am getting more adamant every day, if nothing else, just to buy some time.  During tx, my viral load did not go down like it should have, but my ALT/AST sure did, and that is good enough for me.

You and I are on about the same timeline as far as infection goes, you keep those toes hung in there.  I'm going to set my toes in HARD after my biopsy in Oct. and not budge til my doc prescribes tx again.

I'm still looking for any research, but being a non-drinker, eating good, and TRYING to walk four times a week has got to help.  We do what we can.

Willow  

[ChrisDDD]

You probably already know this, but it seems to be very individual and also based on one's lifestyle; i.e., consumption of alcohol, etc.  I'm sure there's graphs and concrete info out there, but my understanding is HepC begins to rear its ugly head about 30 years after infection.

I was infected in '76, diagnosed by biopsy in '93, Grade 0, no active inflammation.  In '98, biopsy showed Stage 2, Grade 2 or 3; anyway, enough to start treatment.  I've been battling at keeping it at Stage 2, Grade 3 ever since, having failed three rounds of treatment, but told that each treatment set my liver damage back one stage and one grade, that the treatment "bought" me five more years until a better cure comes along.  I feel like I have my toes dug into the edge of a cliff trying not to fall into it.  I hope this helps.  Good luck.