Genotype 1a/1b

[Trish77]

Hi...this is what I know.  
I've had HCV for 20+ years and found out just under a year ago.  I finally got into the specialist last July and found out 09/05/07 that I'm genotype 1a/1b with a high viral load (doctor's words).  From reading these forums briefly, I already know that I should find out exactly what my viral load is and what is considered high.  The doc has recommended 48 weeks of Pegetron and I have a liver biopsy scheduled for 09/17/07.  Then I'll know what shape my liver is in.

I've been doing some research and spending the weekend reading as much as I can and trying to be smart about this.  
Did anyone get a second opinion?  (Here in Canada it doesn't cost anything to do that but it sure takes a helluva long time.)
Did any of you have treatment recommended and decide to wait and why?

Not sure what else to ask because I don't know what I don't know.. if you know what I mean!  Wondering what any of you can recommend to be sure I find out before I start any treatment.  

Thanks in advance and best of it to all of you.

Trish

[paddy99]

I've had hep C for 30+ years.  I've had no symptoms and only found out about it because I donated blood one time.  The stats: 15% of people clear the virus by themselves, 20% need a liver transplant and 65% have it chronically for many years, and many don't know it. So far they have idenitied 6 genotypes.  Genotype 1 is the toughest to clear requiring 48 weeks of interferon + ribavirin.  The other types are treated with interferon+ribavirin for 6 months.  Most prevalent in the U.S./Canada is genotype 1 with a high viral load.  High viral load is over 2 million.  People in this category have about 40-45% success rate with treatment.  Other genotypes have about 75-80% success rate.  Liver biopsy results are put in grade & stage 0-6.  If you are grade and stage are 0-1, you may be OK just to watch it.  Anything 2 or higher, they recommend treatment.  2-3 is fibrosis stage, 4 or higher is cirrhosis, which is severe scarring of the liver.  Your doctor probably recommended treatment because with a high viral load, he knows which way it's going.  I went through treatment because it's better to do it now when you're still healthy before you get cirrhosis, because you can only get worse in the future.  It's pretty standard therapy based on your lab/biospy results, so I don't think you will need a second opinion.  The results: I started with a 5 million viral load, down to 13,000 after 3 months.  It sounds good, but the only number that matters is zero.  It's not where you start but where you finish.  Anything other than zero means it will come back.  Also, they can't really measure zero.  The lowest they can get is no detectable level, which may not be zero.  That's why they want you to stay on the interferon for 3-6 months after your viral load shows you've cleared. In my case, even with over 99% reduction in viral load, my doc said I was non-responsive and ended treatment.  But my viral load is way down and my liver function is normal for the first time in 20 years, so my liver has a chance to heal for a while.  The good news: they are doing lots of research on hep C.  They are finding that there are many people like us who've had it for 20+ years with no symptoms.  For instance, that's what Mickey Mantle died of, but he also didn't stop drinking.  They have recently found a new protease inhibitor which works, but still has to go through clinical trials.  It will be on the market in 5 years or less.   My doc said it's better to try the interferon now instead of waititng, because I can only get worse in 5 years.  But now that my liver function is back to normal, I can afford to wait.  Good luck to you

[zazza]

Going from 5 million to 13000 IU/ml in 12 weeks is a 2.59 log drop. That makes you a slow responder, not a non-responder, since you had more than a 2-log drop. More and more doctors are considering the option of extending treatment to 72 weeks if detectable at week 12 and UND by week 24.

It is important for you to know how to classify yourself. You did respond to treatment, albeit slowly.

[Trish77]

Thank you so much, paddy and all, for taking the time to pass on all that information.  I do much better when I'm well informed.  At this point, my biopsy is in one week today so I'll not have to wait long for the remainder of the results I need.  In the meantime, taking the necessary steps to be ready to proceed with treatment if indeed I decide to go ahead.  Good luck paddy and all.

[Andiamo1]

One option you might want to consider is to wait for the new drugs to get approval.  Telepravir is a shorter duration treatment with a higher SVR rate.  If your biopsy shows little damage, you can certainly wait years for new treatments.

High viral loads may not be an indication of the speed of progression of the scarring and although tx is easy for some people, it is brutal for others. Please get a second opinion.  Non of us are doctors, so we should not give any advice other than to seek good medical opinions..

[Trish77]

No worries, Andiamo.  What I know is that my own decisions ultimately rest with me.  I value the information that other people have to offer but it's up to me to sift through it and educate myself and see it through the filters of my own life priorities and circumstances.  I may pursue a second opinion, that has worked in my favour in the past and it will cement things for me.

I'll look into telepravir ... thank you for that.  All information is a good thing for me right now.

Awaiting the biopsy and results at this point and that will bring things into better focus for me.  

[Andiamo1]

I am currently in the Telepravir trial.  It is blinded, so I won't be able to see the impact on my viral load until my 26th week in the trial.  I am currently in week 21.  Results from earlier trials are very promising.  The drug is being developed by Vertex pharmaceuticals ticker: vrtx.  

There will be a phase III trial of Telepravir starting late fall.  It is for treatment naive patients, so you might be able to get into it if there is a medical center near you that is participating.