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

[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.

[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

[t-hcw]

All I'm saying is some people have hep c for decades and die of something other than hepatitis while others don't fair so well. A biopsy will show you how much damage has been done to your liver. Then you can make an informed decision on when or if you want to start treatment. When you get your results you can talk things over with your doctor. Since you are doing your research you should compile a list of questions to ask. Ultimately the decision to treat lies with you. The more information you have the easier it will be for you to do what is best for you.  

[Trish77]

Thank you for that encouragement.  I'm 46.  I absolutely plan to beat this.  I'm realizing I don't have nearly enough information as all the rest of you seem extremely well informed compared to me and I'm thinking I'll go for the second opinion and when I go for results of the biopsy I'll be ready with questions.  I'm not doing drug therapy until I clearly understand my health picture and the implications and I'll do it in a heartbeat once I'm sure it's required and I won't waste too much time coming to a conclusion. Three kids that are young adults and I'm a single mom.  No hesitation.

That seems like a significant drop in your viral load from one week to the next.. is it?  Good luck to you.  Will be interested to know how it goes for you as you go along.

[debnevada]

Wow. Nice drop!

[r4c7]

Perhaps a bit of encouragement. I'm 55 yo, currently in week #4 of a clinical trial.  Stats: Genotype 1b, grade 2 stage 2 on biopsy, early periportal fibrosis.  My viral load starting out was 22.1 million--which is considered "high".  At any rate, I'm currently in a 48-week Hoffman-LaRoche induction dosing study.  The drugs are PEGASYS and COPEGUS.  So far...

Viral load - week #1 - 1,780,000  
Viral load - week #2 -    126,000

Get the viral load for week #3 Monday.  So far treatment has been tolerable, fatigue being the biggest side effect, with other less nagging sides.  Plan to work through entire 48 weeks and plan to beat Hep C...and so can you.