New diagnosis and wondering about treatment for HCV

[hiddenorder]

I was diagnosed with HCV last summer...suspect I got it over 20 years ago from coke straws...no other real possibilities.  Anyway, I don't have any symptoms...AST and ALT are slightly elevated (AST 50 and ALT 47)but liver biopsy showed no damage.  The specialist I'm seeing is willing to start me on treatment and I'm prepared to start next month.  My question is should I wait?  I'm reading about other drugs that are undergoing trials and while I'm psyched up to start now I'd be interested to hear thoughts from others who have been following this much longer than I have.  

[mremeet]

Hi, sorry to welcome you aboard (this ain't a club you wanna be a member of! ;-)  I've been infected for 20+ years too, and have relatively minimal liver damage like you. I'm currently enrolled in a drug trial for one of the new drugs (VX950), but am also taking interferon and ribavirin. In my opinion, considering you have no liver damage, you have nearly all the time in the world to wait out the newer drugs. Believe me, interferon and ribavirin can be very hard on your body. Some tolerate them well, but most suffer and some suffer tremendously from them. Plus, if you're genotype 1, your odds really aren't that good (about 50/50 on average) for having to invest a whole year (+ recovery time) of your life. If your geno 2/3 then the argument to treat now is much stronger, plus the newer research drugs are mostly concentrating on geno 1's right now (which have a much lower response rate and require double the treatment time when compared to geno 2/3). But for geno 1's, the new drug telaprevir (formerly VX950), is looking pretty good overall. It does add significant side effects for some, but it certainly appears to offer excellent performance in the vast majority who take it with interefron and ribavirin. Right now they're seeing if the course of treatment can be shortened from 48 weeks to 24 or maybe even 12 weeks using these drugs together. Chances are, telaprevir will probably be approved within 2-3 years, although anything can happen in that time (including its cancellation). But there are others in the pipeline too that are looking good. Either way, you'll have time to wait them out. So in my view, if your geno 1 (like me), I'd wait. By doing so you could be saving yourself a tremendous amount of suffering and aggravation, and possibly even improve your long term health prospects (considering IFN/riba treatment can saddle some with long term after-effects). If geno 2, I'd educate myself about current treatment and consider having a go at it.

Take care, best of luck whatever path you take.

[HCA]

When you say liver biopsy showed 'no damage' do you have a copy of the pathology report,whereby you could quote the actual words used?
Your account of the biopsy report seems a bit anecdotal so if you could give some detail i.e fibrosis stsge and other comments it would then be possible to give you some advice.

[jmjm530]

I concur with previous poster. Definitely consider waiting, especially if you are genotype 1a or 1b. While the new drugs may not be on market for a few years, assuming they do well in trial -- we should have some very good data on how successful these new drugs will be within the year. Regardless of how you eventually decide, do yourself a big favor and educate yourself not just about the disease but about the treatment process and its side effects, some which may be permanent. Hopefully, the newer drugs will offer us a shorter treatment protocol with beter results. But even then, if you are a stage 0 or 1, you still may not want to treat until even the generation after this one of new drugs come out which hopefully will be without interferon, which IMO causes most long term problems.

All the best,

-- Jim

[hiddenorder]

Thank you to all of you for your quick responses.  This website is amazing. Based on your feedback I've scheduled an appointment with my doc next week to go back and talk to him again...maybe do more listening this time since I was the one pushing to start the treatment as soon as possible. I have read everything I could get my hands on and am aware of the side effects of the inter/riba treatment but figured I'd just tough it out and make the best of the situation. I'll revisit the biopsy report with him and get the exact language.  My prayers will continue to be with all of you who are doing battle with this thing and trying to help those of us stumbling into it.  

[bobbyullc]

WAIT, I HAVE FINISHED TX AND CLEARED. IF I COULD GO BACK AND WAIT EVEN NOW I WOULD. TX WILL BE MUCH BETTER IN SEVERAL YEARS. GARANTEED. I WAITED 9 YEARS AND TX SVR WENT FROM 9% TO 50 %. IT WILL GET MUCH BETTER IN THE NEXT FEW YEARS.
WAIT, WAIT.

[nygirl7]

If I had no liver damage and had it 20 years I would WAIT.  For sure.

No doubt.

There is no rush to run out and treat right now, especially since they are getting so close with newer drugs that while they might not be any easier might help the odds of being CURED.

I would definitely wait and see if I had that news, knowing what I know now.

(PS I got it the same way as you. Just know you aren't alone and the people in here completely understand what you are going through.  Having done 72 weeks of treatment I can tell you it is doable but can leave you with MANY problems of it's own set that seem worse than the HCV afterwards).  

I wanted this disease GONE and had decided to treat before my biopsy but I am a mental case...so I can't in all good concience give you the advice I'd take.  I'm pretty sure knowing what I know now I would wait if I could (I am stage 3 so don't have much choice).

[wndycity]

I had a similiar situation and opted to treat. If I had a do-over I would definately wait. Good Luck!

[mikeymike2]

I agree - wait if you can

But that isn't my main reason for posting - many others will give you the same advice.  My main reason is just to remark upon how replies to the (very common) treat or not to treat question have changed on this site over the past 12 months or so.  I well remember that anybody advising "wait" would be shot down by scores of people undergoing TX; as though advising "waiting" was a treasonable offence.

Times have changed.  Something must be in the air....

[Teufelhunden]

Just got a copy of my biopsy report today. Genotype 1a, stage 1, grade 0, 53yr old M. Into my 32nd week of 48. Peg/riba. Should've, would've, could've. I guess if I had to do it all over again, I might have waited too. But this I do know, I want this disease out of my body! Good luck in your journey. Whichever path you choose, you'll not travel alone.  

[Kalio1]

Glad to see you found the forum, it's always nice to have new people join in. You can go to www.clinicaloptions.com there is a lot of information on treating, when to treat, disease progression,etc. good videos, charts and reading material. Well worth a visit. I know it's overwhelming at first dealing with this disease.
You do have to register at that site but it is well worth it.

It doesn't matter how you got this disease and it could have been due to past coke use, however it also could have been due to vaccinations as a kid some medical or dental procedure you had, a visit to a manicure salon or any number of other places. It is a very hard virus to kill, in fact disinfectants can not kill it believe it or not so you can see how salons would be problematic. ONLY heat can kill it. It can live a number of days on any surface. If snorting coke was a high risk activity, it seems to me a lot more people would have it, of course that is just my opinion. You;d have had to have been a pretty hardcore coke user I would imagine. My point is that you not beat yourself up as to how you got, you will never really know for sure.

Hep C is a nonlinear disease, in some it progresses faster and causes more health problems than in others. It is a blood disease, an immune system disease that primarily affects the liver. The virus prefers our livers and causes the most damage there but it can impact many parts and mechanisms of your body.

I agree with the others, you need to see your biopsy report.

There is a lot to learn, there is no rush to start treatment. I understand wanting to "get rid of it" and to start treating right away but there is so much to learn before you decide how to deal with having this disease before you can make an informed decision. This is one disease that taking the time you need to learn it all before you commence treating can help you to be successful with the treatment in the long run.

Please learn about the other issues that can arise when you are HCV positive if you plan to postpone treatment
by searching "extra hepatic manifestations"
An HCV positive status puts us at a much higher risk for other disorders and diseases including but not l imited to diabetes, leukemia liver cancer.
Also keep in mind that increased liver damage decreases your chance of success with treatment.
I don't say this to scare you but so you can research it.

[bobbyullc]

ditto, i got poison pen letters by just suggesting to wait, and feared to even mention my opinion on this forum. why do 48 weeks if most likely it will be only 4 or 8 weeks with double the svr rate in only 1 or 2 or 3 years? duuhr!!!

[sfbaygirl]

I don't remember all that stuff, glad I wasn't around. Perhaps that all the people treating now realize it's not something you do lightly. NOw with the new drugs in the pike it can make sense to wait in many circumstances.