i'm Genotype 3a...should i put off treatment to wait for VX-950?

[niceguy2007]

guys i'm 25 years old
Viral load 13000 IU/ml
HCV genotype 3a
Ultrasound was normal, no biopsy yet
Acquired virus probably about 2 years ago

i'm kind of uneasy at the thought of all the side effects of interferon+riba treatment...so i'm thinking of putting it off for 2 years to wait for the J&J treatment or others that may come up, and manage 2 years with milk thistle and homeopathy...

is that a good idea?

[susan400]

It's always up to you and your choice what you want to do.  But, if it were me, I'd wait.  I've not been successful with the Interferon's (all of them) and Ribavirin. I've tried 8 times and have never cleared and I have alot of post treatment side effects.  But, you need to do what's right for you and your life. Right now, if I'm to be healed it will be by the hand of God and his healing.  This is not to say that if they come out with a new treatment such as that VX drug and that I can take it w/o interferon/Riba that I wouldn't try that.  But, I've got so much resistance built up against interferon and Riba that it's useless to use them anymore.  God Blessings on you.

Susan

[HCA]

Wait! You have plenty of time,you are young and reently infected.
The protease inhibitors will be used in combination with the old drugs,so you'll still have some side effects,but greater certainty of cure and possibly short treatment time.
IMHO homeopathy is garbage.Take milk thistle if you want also vitamin e

[amirtracy]

Again, your choice. If it was me I'd wait. tx is tough. maybe soon it won't be. you've got time. best of luck

[niceguy2007]

thanks for the advice guys...

i'm really scared of the side effects such as anemia...i dunno if i could take that..i'm already quite skinny and short, although in good health.

homeopathy has a lot of overlaps with herbal supplements.  for example, the Carduus Marianus mothertinctures is pure preserved milk thistle.

[Kalio1]

It isn't a good plan to make your decision based on fear of side effects, you could have minimal side effects too.
Also the drugs you are pinning your hopes on are not approved for use and still being tested. Keep in mind it isn't even being tested as a stand alone drug treatment, the "new drugs" are being administered WITH Interferon/Riba in the drug trials and it is very likely that is how they will be taken when AND IF they do get approval for use by everyone, so it isn't like you can take some new miracle drug all by itself that it is made to sound like, you would be taking the current treatments AND the new drug together.
Try not to take what you read here and let it scare you into making decisions that affect your health. Talk to your DOCTOR. Although you probably have "time" to wait. You will STILL have this virus in you during your wait and be facing the same dilemma in "a few years"
THe FDA gave the company "dast track" approval status( meaning they can bring it to market quicker) ONLY if it is administered WITH Iterferon/Riba/ the people in the trials are taking it with Interferon/Riba now.

[Snookmiester]

I'd wait.. I was 26 when I started tx, and it was the opposite for me, I was scared INTO treatment.. Told I had not other options, etc.. As you know, you do have options. If your not feeling any symptoms and the virus isn't causing any discomfort or quality of life issues, I would just wait for better more effective meds. Keep monitoring your labwork, have routine CT scans, and I would truely recommend a biopsy. Ct scans will show SOME abnormalities, but a Biopsy will give you "definate" answers. Then you have better ammunition to base your decision on.
I also would not base my decision soley on the vertex trials..Look into BILN2061..This protease inhibitor recieved all the hype of the current wonder drug, yet was found to have cardiac toxicity.. It was immediately sidelined. You can't base decisions on what drug MIGHT come along, but base your decision on your current health and condition right now. If you can wait, wait.. But as I know, being young and undergoing tx is a very favorable factor.. I went 48 weeks without anemia, or without any rescue drugs, and only minimal sx's.. I'm now clear, but I do have some lingering sx's that I hope will resolve with time. As a geno 3, you would only be treating 24 weeks. Decisions, decisions....Ball is in your court, and I wish you the best with whatever you may decide.

[bobbyullc]

personaly,
i would not even consider tx at present due to new drugs that 3 large drug co,s are only 2-3 years from marketing.
i wasted a whole year of my life doing tx and not living.
THERE ARE ALSO REPLACEMENTS FOR RIBA THAT DO NOT AFFECT THE HGB.
VX950 MAY INCLUDE RIBA AND PEG BUT THE TX DURATION WILL BE MUCH SHORTER AND THE SVR ALMOST CERTAIN.
i feel many people treat out of fear and paranoah WHEN WAITING ONLY A COUPLE OF YEARS WILL NOT MAKE A BIT OF DIFFERANCE. THERE IS ALWAYS THE "WHAT IF" IF I DO NOT TREAT AS WELL AS WHAT IF I DO TREAT NOW. I READ AN ARTICLE LAST NIGHT THAT SAYS ONLY 10-15% WILL GET END STAGE LIVER PROBLEMS IF THEY NEVER TREATED. I HAD THIS DISEASE 12 YEARS LONGER THAN YOU WERE even ALIVE BEFORE I TREATED.
I WOULD LIKE TO SEE A BX. TO BE CERTAIN BUT IF THE DR. FEELS YOU ARE SAFE and it has only been two years IT IS PROBABLY OK.
there are articles about homeotheropy having good effects on slowing the progression and keeping the liver healthy.
go forth and enjoy the next 2 years and forget about having hepc.

[Kalio1]

What drug "doesn't affect the hgb" and is a replacement for riba? Do you mean a drug that is being developed now? What is the name of this "new" antiviral drug?

The "new drugs" if you are referring to the protease inhibitors VX950 are being administered WITH Interferon and Riba.
We do not have a drug therapy on the horizon that will replace thce urrent drug therapy we have, we only have one to be used WITH the current drugs.

[jmjm530]

Promising non-ribavirin therapies are now in trial such as Index's valopicitabine.
http://www.hivandhepatitis.com/hep_c/news/2006/011006_b.html
While the next round of American trials will combine Vertex with Peg and ribavirin, in Europe Vertex will be test without ribavirin. While one may argue the timetable, it is hard to debate that at some point ribavirin will be history in terms of treating hepatitix C.

-- Jim

[Stvski80085]

I did here about a new antiviral drug that so far is looking better than the riba.  Someone on here had a link to the information.  I will see if I can dig it up.   I may have come across it surfing around.
I will let you know what I find.

Take care,

Steve

[MissMiss]

Wasn't that article about a cholesterol drug that they found worked better than Riba?  

http://www.medhelp.org/forums/Hepatitis/messages/41488.html

[bobbyullc]

niceguy,

please check the post "i lost my faith in god". it was posted today.
again,if you only had this for two years you should have 20-40 years or maybe life to make up your mind and watch for new tx. those are good odds.

kalio,

yes there was a drug to replace riba that did not work through the liver so did not affect rgb in trials. there are several other drugs in trials that improve the svr rate.\i accidentally dumped all my archives so i do not know the names. jim's note was an example.
YES,the vx950 and others are in combo with riba and peg but the svr rate was almost 98% not 45% and the tx. time dropped to weeks not months. if anyone is stage 3 or maybe 2 definately tx. now but 0-1 have options to wait a few years. the only side affect is fear and i did not have that. my dr is an idiot but he did instill in me the fact that this is not an untreatable problem and i refuse to let it take any more from my life than it has. have a good day. bobby

[Kalio1]

I thought you might be referring to the new one, Alinia but I hadn't thought of valciprodine.(sp) I looked it up and it looks interesting, doesn't look like we can ever guess when it will be out though.  The poster was saying his fear of sides was stopping him and I don't want him to think he won't have to use these same drugs later on, he will have to with VX950, it is an add on drug to current meds. If you could take it for less time that would be great but we don't know if that will happen.

[HCA]

The replacement drug for riba is viramidine,which I believe comes to market next year.It does cause some anemia but nothing like riba.It is no more effective than riba.

[Forseegood]

Hi, I always consider length of infection with this disease, if you happen to know what it is....it is a slow moving virus for the vast majority of people...you've had this two years? Ask the people here how many years most of us have had this, this virus takes a long time to even start doing damage, at the very least 10 years, or 15, average is 20-25 from all I can see...I've had it close to 30 and it's only beginning to do damage with me, many here have had it at least that long...

And youre talking about 2 years??...

The new drugs perhaps will be piggy-backed on the other drugs...Right now they are seeing if it will be interferon and riba and peg, or just peg and interferon, etc. they are trying out different variables for the best result....

From what I know, if they can eliminate even one of those drugs from the protocol it'll be a gift...and the fact that the new drugs slam the virus out of the system in a much shorter time then anything else before can only bode well in terms of clearance, one would hope - so right now they are seeing if treatment times will be perhaps 3 months for geno 1's, instead of 48 weeks or longer...

It only makes logical sense that the longer the treatment times the more it is possible for worse outcomes re lasting side effects...some newer, shorter treatment lengths will be a real gift to all of us...

When I speak to the people who only had to take this treatment 24 weeks, many tell me they don't know how the others can take it for 48, but they do....lots of brave souls here, but I bet if they were given their druthers, they'd opt for the shorter treatment times, of course they would...


By the time this virus starts causing you harm they will have had much better treatments, I'd bet the farm on that....maybe not even Vertex, perhaps something better then that, they just had an article on statins, God knows what they will have even 5 years from now...you have to realize that I could take my own case, when I had it two years, I had no idea and I was just living my life as healthy as a pup....very athletic and physical, etc...sometimes I'm glad I didn't know back then cause there wasn't much they could of done for me anyway, and I was healthy as a horse till about two years ago, what, for 28 years?

The treatments they have now are not the best, yes, many can take them without too much trouble, and even be okay after everything's said and done and they resume their lives as before, there's a lot of people like that, but there's a lot of peole who suffer through the treatment, and some suffer after the treatment, why not wait for newer, better treatments?

[susan400]

I personally will not be using anymore Interferon and Riba.  I've done it 8 times and I'm done.  My body is resistant to both drugs as it evident since I've never cleared. This is what my doctor has told me, too.  If I'm going to treat again it will most definitely have to be a stand alone treatment w/o these other drugs.  Even though I'm a stage 3  and 1A/1B genotype, I won't treat again with these drugs.  It's a waste of time for me and has messed me up in too many ways.  Unless it gets FDA approval for a person like me to take just a drug like for example VX-950 stand alone then, I'll just have to wait or have Jesus heal me and I know that's possible.  In my humble opinion!!!

Susan

[Pdilly]

I know I asked this before but have you tried to get in the new trials for V950?

[Algernon]

I'm also 3a and just finished 24 weeks of TX five weeks ago.  I don't know yet whether the TX "worked" or not.  

If the TX didn't work on me, I'm waiting on better drugs (hopefully shorter duration of TX AND fewer side effects).

My advice would be to wait on better drugs.  Good luck to you.

[bobbyullc]

THE VX950 SHOWED UND. IN 7 DAYS IN 12 OUT OF 12 TESTED PEG/RIBA NEVER EVEN COMES CLOSE. IF IT DROPS THE VIRUS THAT FAST AND KEEPS IT DOWN I WOULD THINK TX WILL BE MUCH SHORTER AND MAYBE EVEN LESS DRUGS.
IF YOU GET TO STAGE 2 OR 3 DEFINATELY TREAT.

HOPEFULLY VX950 CAN PROVE TO BE AN EFFECTIVE MONO THERAPY BUT NOW THEY ARE JUST TESTING ON COMBO.

[susan400]

I've heard of the trials, but until they get it in a center that's closer to my home then I'm going to pass.  The nearest center to me, in Fla. is down in Miami.  I have a problem with driving longer distances by myself because I have a tendency to get too drowsy and drift off at the wheel.  It's too hard to find an individual who is willing to give up a whole day to go to Miami and back with me and probably have to do it on many occasions.  So, until they get a study at some place in Orlando, which is considerably closer to my home then, I'll pass.  I've already checked Gainesville, but they're not doing the VX study yet and whenever they would start it probably won't be on someone like me who has not been off of treatment for the 6 mon. requirement and is a chronic non-responder.  That was what I was told by the woman there.  If I had to drive to Gainesville to get it (if they were even allow me to participate) I could stay with my parents in Lake City when I had to make those trips and it wouldn't be so much driving in one day.  I am going to be staying off of treatments for a considerable amount of time this time.  I've just done too many of them and I'm tired of it all.

Susan

[cuteus]

promising new drugs do seem to be in the future. They hopefully will have less side effects, but no one knows for sure what the sides will be, will they be better or worse than present tx? even if shorter tx is possible,most sides do show up within the first 6 months in this tx, so the same might be possible with future drugs. The virus is dropping quickly, but no data onSVR yet. There are a lot of unknowns yet. Rudy completed his trial with NM283, and I don't remember him complaining too much about sides. He awaitsPCR to see if SVR is achieved. Waiting for meds that have yet to be proven to have less severe sides and produce SVR is still a bit of a gamble. Age is always a big factor to consider, since if the new drugs are delayed due to unforeseen issues, lower SVR chances come into play as we age.
Many things to consider.

[niceguy2007]

excellent comments everyone.

those of you in the knowhow: please do keep us updated on the new drug developments.

One thign i'd like to add is that i have this nagging feeling that genotype 3 may have a faster disease progression rate than genotype 1...and we may not have teh luxury of waiting as the genotype 1'ers do... just a feeling though...

[niceguy2007]

i pray that i'm wrong though... does anybody have info on genotpye 3 faster progression?>

[Algernon]

I have no data but I am a 3 a case study.
I had hepC for 32 years before I treated.  My last biopsy was reviewed by two doctors.  One said I was stage 1, one called it stage 2.

My liver enzymes were in the normal range until about six monthis prior to treatment and then only barely elevated (although that was one factor that tripped my decision to treat.  By the way, "normal" may not really be normal according to recent studies.  My "normal" might actually be much lower than the upper level of the normal range on most tests (in fact, my liver enzymes during TX and 2 weeks post TX were in the lower range of normal while they were in the upper range of normal prior to TX.  That means my enzymes may have been elevated--relative to my own personal norms--for quite some time).

Studies clearly show that 3a is associated with fatty liver (steatosis) more than other genotypes.