I was diagnosed with Hep C in 2001. I naively assumed that since my mother was asymptomatic that I was as well. I recently got the results from my first liver biopsy which tell otherwise. My swelling is 1-2 and scarring 2. My doctor has recommended Interferon and Ribavirin. I've only heard horrible things about this treatment (low success rate, side effects, etc.) Can anyone give me any advice in considering this treatment or help in finding something else? I feel like all of this has been sprung on me in the last two weeks. Any help would be greatly appreciated.
I chose to treat because I was a Stage 3, Grade 3 and I really wanted to attempt treatment before I turned 50 (I'm 47 now). If I had been a Stage 2 like you I may have held off a bit on treatment. Like PSP said, it's a personal call.
Genotype 1a, Stage 3, Grade 3
Finished 48 weeks of tx on 4/13/07
Hoping for SVR on Sept. 20, 2007
I was stage 2 grade 3. I am only 38 yrs old. I chose to treat . To me it was worth giving it a shot . I didn't want my liver to be damaged any more than it is. That was my personal choice. New drugs are coming in a few yrs that have less side effects and higher rates of success. You can see if you can get into a trial drug study. Some people on this forum are in trial study's right now. Good luck to you either way.........
What genotype are you? It sounds like you can wait for the new treatments coming out in 2009. Treatment time will be cut in half for genotype 1 patients. Don't worry. You have time. I was stage 3 so I had to treat.
has it been announced that the trial drugs will pass FDA, be in mass production at the phama, and on the Insurance Companies list of approved drugs and available to the market in 2009, did I miss something?
No one knows for certain when the new drugs will be available and no one knows for certain how fast your fibrosis will progress. Keep that in mind when you read the advice here. People can make educated guesses and that's all they can do. As has been said, it is a very personal decision that should be made after discussion with a good hepatologist. One size doesn't fit all Maggie so educate yourself and do what feels right to you. Good luck, Mike
Also keep in mind that no one can tell you in advance how you will react to the treatment drugs. Some here have significant problems both during and after treatment. Take a day or so and back read posts in this forum and in our more medically oriented forum and you'll get more of a perspective: http://www.medhelp.org/forums/Hepatitis/wwwboard.html
My take is that as someone who has stage 2 damage, you still have time to make a decision. Meanwhile keep seeing your doctor and keep an other eye on some of the newer drugs in trial like Teleprevir which hopefully will be avail in 2009.
Don't let anyone here scare you into not treating or into treating. There are definitely risks and rewards to both opinions. Now you have mine.
Iam stage 2 grade 2 and iam treating now almost 1 week,and its doable as long as u drink plenty of wtr,I went back to work today..my job is stand up job all day, it drain me but iam gonna do this.. GOD is my refuge.I was saved by his grace..
Thanks so much to everyone. I'm so glad I found this forum. It seems no one close to me really wants to discuss the details of all of this. I know it's hard on them too, but I need someone to talk to. Thanks for all of the advice. I'm not sure what I'll end up doing. I have to meet with a teaching nurse next week to go over more details of treatment. I've heard of other treatments that may be available sometime in the future so I may look into that a bit more. I'm 26 and I've been told that sides aren't as bad for younger patients. Does anyone know anything about this?
I am sorry for your diagnosis. You are younger than my youngest child and it appears that you have had this from birth. Yes, I believe the younger you are, the better you handle the treatment. It does take a chunk out of your life, but, in my opinion, it would be better to take care of this before you decide to have children. If you do choose to treat, you must be very careful about birthcontrol. Very careful. Ribavivin can cause birth defects.
Many of us are relatively unsymptomatic, by the way. Here is a website that contains a lot of answers to questions.
Yes, side effects appear to be better for younger patients but at your age, a few years here or there shouldn't make much difference in terms of side effects. What everyone is hoping for is that the newer treatments will cut treatment time in half with twice the cure rate. For geno 1's that will translate roughly into 24 weeks (instead of 48) with an 80% chance of being cured (instead of 40%). Preliminary data from the Telepreivir trials has already demonstrated this and more data should be out by end of the year. Beyond that, the hope is that within ten years even less shorter, less toxic treatments will be available, possibly without interferon and even ribavirin.
Not to confuse with the "ten years" statement above -- that would projections for tne next-next generation of treatments. The treatments I spoke of with double the cure rate in half the time is projected to hit the market around 2009, if the trials continue to be successful.
Did they tell you what genotype you are? If you have one of the easier to treat genotypes (2 and 3) you can generally treat for a shorter time (24 weeks) with the current drugs. But unfortunatly, most here in the U.S.A. are genotype 1, which is harder to treat.
Since you don't have a lot of liver damage, it might be to your advantage to wait until Teleprevir comes to market which hopefully will be in 2009, should the trials go well. That way you would not only have the benefit of the trial results, but your doctor would be able to dose the drug in the most effective way, i.e. no placebo arms, etc. But of course, discuss all options with your specialist. I'm assuming you're seeing a liver specialist (hepatologist) before many gastro's may not even have heard of the drug and are generally behind current research in terms of treatment approaches.
Maggie and all those out there deciding to treat versus not treat-
This has got to be the best advice you will get from anyone on this board - Do yourself a favor and listen to it...
Mikesimon said "No one knows for certain when the new drugs will be available and no one knows for certain how fast your fibrosis will progress. Keep that in mind when you read the advice here. People can make educated guesses and that's all they can do. As has been said, it is a very personal decision that should be made after discussion with a good hepatologist. One size doesn't fit all Maggie so educate yourself and do what feels right to you. Good luck, Mike"
It might be to your advantage to treat now too but we don't know enough about you to offer an informed opinion. We don't know your age, the age you suspect that you were infected, your weight (obesity?), whether you have diabetes, your alcohol intake, whether you are coinfected with HIV or HBV or have psychological factors that would come into play when making the decision. Some people don't handle treatment well and others don't handle having this disease and not treating well. And though Teleprevir looks very promising, we don't know with certainty when it will be available and we don't know what the long term side effects of that drug might be either. And Teleprevir will likely be prescribed with ribavirin and interferon so those drugs will probably still be in the mix albeit for a shorter treatment duration and together with a higher success rate. That makes Teleprevir look very promising and I am hopeful that it will be available within 2 years and that it will have high efficacy and a good safety profile but we really don't know that yet. That is why you need to discuss all of this with your doctor. Some people would prefer the devil they know over the devil they don't know and others the devil they don't know over the devil they know but, neither preference is necessarily the right choice. It's a personal decision Maggie so take everything here including this post for what it is - another person's opinion of moonlight. Educate yourself Maggie and make sure you have a good hepatologist to thoroughly discuss all of this with then make your decision. I wish you good luck, Mike
Dr. Gish, one of the best hepatologists in the world and transplant surgeon, says the new meds will be available iin 2009. It is not just a rumor. It will cut the time of treatment in half for genotype 1s.
I am in Phase 3 trial of 'albumin interferon/ riba" , which is by-weekly, and later monthly?, shots, suppossed less sides. Type 2b, stage 3 fib., 49 yrs. old. (will do last shot @ my 50th B-day, great present.) Of course until I walk in on Sept. 25th I don't know if I do that or the standard.
Supposedly this will be 'out' by 2009. I believe the Type 1 phase 3 has already been done.
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