Possibility of cure or false hope?

[chryss]

I have had hep c for 3 years now.  During that time I have seen my liver enzymes start to climb.  I am considering treatment of interfeon shot 1x week, in addition to ribavirin.....6 month treatment.  I've been told chances are very good of clearing the virus.  Any thoughts from anyone would be appreciated.

Thanks

[jmjm530]

Merry:HA HA HA, wow the people in here are great aren't they!!!
boy, I've learned a bit in 4 months since diagnosis: here's the main line:
---------------
Forgive me if my post seems argumentative or picky, but sometimes better to err on the side of caution, so please take my comment in that light.

Your above statement could be read by someone new here as meaning that your following statements regarding HCV and treatment are some sort of consensus here.

And while I have no desire to do a line-by-line, your statements certainly are not a consensus here. I assume you just meant them as your opinions after being here for awhile, which is of course what we all have -- opinions. just wanted to clarify that.

Be well,

-- Jim

[merryBe]

HA HA HA, wow the people in here are great aren't they!!!
boy, I've learned a bit in 4 months since diagnosis:
here's the main line:
by the time you start to feel the real meal deal pain wise you may be in stage 3/4 since nerves are not in the liver per say, just surrounding it. Your stage of liver disease is NOT necessarily reflected in your viral load or how elevated your enymes are or aren't.

Your immune system can fight this for years while slowly your liver is turned to rock. They may tell you you just have chronic fatigue, or fibromyalfia or a host of other things for years. (hee what fun that was!)

SO:

Do not avoid treatment for something better unless you have biopsy and fibrescan showing no damage at all yet. Do not settle for ultra sound, shows nothing, cat scan still limited, they show little.

Make sure they take 3 core samples of your liver, not one, same cost, but it will tell far more, as you may have more damage in one area than another.

some hospitals are busy and lazy, so ask how many samples they take, it's your money and life at stake!

just do it.  A year of waiting can spell a point of no return so if you haven't already tried, you take a real risk. Decide if you can afford to leave your family. what's worse, a job loss, or a life? If you have to be a little sicker, or work from home part of the time, whatever it takes, just do it.

Document when you inform an employer because better safe than canned, as long as you suit up and show up, they can't legally fire you. take sick leave if you have to.
take your shot on friday night, you'll sleep through the first night, and possibly be pukey on Sat-Sun but able to return to work MON, if not too advanced in the disease.

I was told to just accept a lot of weekends in bed and resting. It's true. Better this than no hope, and no help.Get plenty of rest and no pot, booze, or cigs.
Hope that helps.

[chryss]

i have genotype 3a also, and like you, i have no symptoms.  i did notice within the first year of contracting this disease i had all over intense body itching.  i think it was related to an "incubation period?"  not sure if that is even the right lingo or not.  but, i remember it very clearly now and i've never had it since then.

and, yes i fully understand about the drinking thing.  there have been way too many times i have thrown all caution to the wind.  i have been "visiting" some AA meetings, actually trying to decide if i might fit there.  someone made a recent comment, "you can take the alcohol out of an alcoholic, but you're still left with the "ic."  how simple and profound!  i have felt that "ic" pretty much my whole life.  so, now my train of thought is.....i need to clean up the "ic."

[shaddamom]

I was diagnosed in May or June. I have had the virus somewhyere between 10 & 15 years--- no damage detected thru CT scan, but ALT & AST were elevated which led to the test that said HCV. I also have an easy GT to treat -- 3a.  I have been a somewhat heavy drinker for almost as long as I have had this monster (although I didn't know about the monster until recently). I feel OK - no symptoms yet but I begin my treatment on Friday.... I figure that just because the train isn't at the crossing yet, it doesn't mean I don't want to get off the tracks. I have also heard that treating early makes a big difference in the damage done to your liver.....  

(If you keep tuned in here, you will be able to follow some of us thru our treatment process and decide later--- there are a number of us on here that are in the OCT 2007 freshman class of TX)

[copyman]

hey chryss. sounds like you are ready to go for it. i commend you for your strength. not many people want to spend around $20,000+ to feel like $%^& for 6 months or a year. at least you are doing the right thing finding out as much as you can before starting. one last thing, did it ever occur to you that if you stopped drinking "even your glass or 2 of wine on the weekend" that your liver enzymes may stop rising? drinking ANY amount with HCV is like throwing gas on a fire. stop all alcohol and take milk thistle for a few months and a good chance your enzymes will drop. good luck with whatever you decide

[moahunter]

My only other comment - is that going through Acute hep C symptoms (which is not common), with enzymes over 900, might have affected how I think. I was like a shell at that time, I couldn't even watch TV. I fear that is what dying from liver failure would be like, not even knowing who you are at the end. Personally, I will do anything to avoid that decline.

[moahunter]

I don't think it matters much how you get it to be honest, I just post that stuff on my page, because I am a bit different than most (i.e all co-workers know I have disease so I have to "constantly" explain it, etc..). The decision was probably easier for me, it just seemed natural to try and eliminate the infection immediately. I am lucky enough to have very good specialists right from the outset too.  

Meki's post hits it much better than I have Chryss. I hope I haven't "sugar coated" treatment too much, its not nice, in fact, I really hate it most days. But on the other hand, I would love to get this over with and move forward.I am sure you are strong enough to treat and get through it if you make that decision.

[chryss]

that is quite an ordeal you had to go thru!  i think it was a good thing to treat as soon as you found out.  in retrospect, i wish i had of begun treatment  3 years ago when i was first informed of having this thru a blood donation.   it's tuff to make these kind of decisions when you first find out.  you know how they talk about stages a person goes thru when confronted with something big like this?

denial is the first one, then there is anger, i think there is one or two others.....and then there is acceptance.  i think i have finally arrived....

[meki]

"If my wang doesn't fall off after taking it, it's probably safe for everyone else to take. ;-)"

ROFLMAO!!!!

OMG the humour on some days.. LOL!

Alright then - here check it Chrys..

It's like this. It really depends on you - your mind - your willingness to have this disease - and for how long.

A lot has to do with your determination, beliefs - and your faith in the medical community.

I'm 8 months Post TX - SVR... Ask me if I would do it again.... NOPE...  Glad I got lucky the first time, but if they said - ya gotta do it again... I'd be like - Uh uh --- no way... It was a horrid experience for me --- but --- I'm GLAD I did do it the first time.

People like NYgirl and Su and Andi... Wow - thems folks are HEROES.

With all that said --- knowing what I know now... and knowing everything --- I still would have treated the first time.

I "cured" - but a lot of folks don't.

Read all of the sides ----ask yourself --- can you live with that?

I mean - can you live with feeling awful?

The TX will open your eyes about the medical world --- the pharmaceutical world --- and you'll understand a lot more abotu diseases and human nature by the time you are done. It is a life changing experience.

But --- it CAN cure you.

You are the only one who can determine if the benefits outweigh the risks.

Keep humour and laughter in your TX and life --- and all should be well.

Hugs,

Meki

[moahunter]

If you click on my name you can read my bio. I had acute symptoms - enzymes went up over 900, then came back down to around 100 (is 17 now on treatment).

I am unusual in that my first round of treatment was almost started immeidatley (i.e. we know date of infection) - about 2 to 3 months after infection from memory.

[chryss]

one more thing.....how long did you have the virus before you treated?  and, before you started treating, did you see your liver enzymes climbing with each 6 month blood test?, (similar to mine)

and, PLEASE.... don't start smoking again!!  you are strong, you don't need them!

:-)

[moahunter]

That should read - would "not" be smart to take up smoking again. It's too expensive in Canada now anyway:-)

[moahunter]

If you can, you probably should stop drinking regardless of whether you treat. I understand that if a "cure" is obtained (SVR) drinking may be safe. Otherwise, there is a risk.

I am 35. I used to drink quite a lot. To be honest though, once I started treatment, I lost all interest in drinking. I feel different about booze now for some reason, and are not to interested in ever starting again. For some reason I want a cigarette (I quit more than 10 years ago), but it probably be smart for me to take up smoking again (may not make much sense given the Riba has made me a bit out of breath at times anyway). I tend to just focus on keeping busy to keep my mind off it, and get through the week.

[chryss]

just curious, how old are you?  and, did you drink alcohol?  minimum or moderate amount?  i have heard that a person needs to stop drinking completely while treating with interferon, other wise the drugs may not work.  have you heard this?

[chryss]

thanks so much.....your comments have been helpful.  and best of luck to you also.

[moahunter]

I was lucky enought to be undetectable at 4 weeks (no virus able to be measured in my blood), so my odds of success are very high, like yours may be given your Genotype.

The side effects for me have changed over the course of the treatment. I found some different side effects seemed to kick in around 20 weeks (some hair thinning, etc, but no big change).

Personally, I like the control that treating now gives me. I am not always wondering "what if I had treated", or "is my liver slowly being damaged", or "will that wonder drug arrive soon", or "will the new wonder drug have side effects we don't really know about?". Seems to me we are lucky to have the chance to maybe cure this disease now (previous generations did not), that's good enough for me. Good luck whatever you decide though.

[chryss]

i like your opinion, it seems to make the most sense to me thus far.  why wait when there is something available RIGHT NOW that could possibly put this whole thing behind me?  

are you seeing any improvement with your treatment?  interferon and ribavirin?

[moahunter]

I am already 6 months into treatment (I am doing 48 weeks), it is not pleasent, but it is not the end of the world either. I would have loved the chance to stop at 24 weeks, you can manage this.

While a new drug may arrive in the next few years, it will be at least 5-10 years before we understand all the side effects. Doctors are really only starting to understand the dosing and side effects of Riba and Interferon now. Who knows how long to learn about additional drugs that will be added to the mix.

You are lucky to have a highly treatable varient of Hep C.  IMO you are better off doing what is proven and known now, rather than take a chance waiting, by which time you may have more liver damage.

[chryss]

for the record, i am a woman.  :-)   i don't know anything about protease inhibitors...  :-(   can someone please enlighten me on this?  and what is SOC?

[bajajkawa]

I achieved SVR with standard treatment for 16 week ie. Riba & Peg.  In my understanding for GT 2 if the viral load is below 800,000 and you attain RVR then 12 weeks can be recommended.  For GT 3 if the viral load is below 800,000 and you attain RVR then 16 weeks can be recommended, otherwise the standard treatment is 24 weeks for GT 2 & 3.  Current HCV treatment is headed towards personalize treatment as success of treatment varies by race, weight, viral load, sex, age and GT.   Since your viral load is over 2 million and assuming that you have GT 2 or 3 your treatment is likely to be 24 weeks.  New treatment currently on research indicates shorter duration and with no inflamation I would seriously consider to wait.

[mremeet]

I'm not saying he should or shouldn't wait for a PI. That's entirely chyryss' call. But you ask "why in the world he/ she should subject himself / herself to any Protease Inhibitor??????" The answer to that question is very simple. Someone might voluntarily "subject" themselves to a protease inhibitor + SOC for the purpose of (1) increasing the odds of being cured (and thereby reduce the likelihood of a failed treatrment), (2) to significantly shorten the duration of treatment (when compared to IFN and riba alone), and (3) to avoid subjecting themselves to a longer duration of interferon and ribavirin dosing (and their associated short and long term negative side effects).

[mremeet]

Oh yeah you ask about my numbers: starting VL = 1.4 million IU/ml, F1 liver fibrosis, ALT/AST about 50-70. Pretty typical stuff, like yours. Your ALT (SGPT) jumping up to 102 is a little concerning, but it could be just a minor fluctuation. Have your enzymes checked again after a few weeks to make sure it was transient, hopefully it will have returned to a lower value by then (althoug it may stay up there for awhile). The disease fluctuates up and down within our bodies over time, so don't get all worked up over it just yet. Discuss it with your doctor and continue to educate yourself about your disease. It will help you not only understand your disease, but also prepare you for a successful treatment when that time comes.

[Tallahassee]

Wait a second, Gentlemen, Chryss has an easy treatable genotype -- why in the world he/ she should subject himself / herself to any Protease Inhibitor??????  Regular SOC for up to 12 weeks to see his/ her response and see if the treatment needs to be continued.  

[mremeet]

I've had HCV since 1983. I decided to treat when this Telaprevir trial came along last year because for me the time was right. The new drug added just the right amount of additional oomph I needed (and had been waiting for) to convince me the odds were good enough to go for it (I had geno 1, which is the hardest to treat). Plus, although my liver had minimal fibrosis, hep C had caused me to have chronic fatigue ever since I got it way back when I was 17. I was also diagnosed with multiple fully formed gallstones and gallbadder pain when I was only 31. Thirty-one is pretty young for that, HCV can cause gallstones in those who have a longstanding infection. I'm sure I had them even in my mid-20's (no family history whatsoever for gallstones either). And yes I drank recreationally all through my late teens, 20's (even a few "beer bongs" here and there) and 30's (slowed down alot after I found out I had HCV). If you honestly stick to only "a glass or two of wine" just on the weekends you should be fine, especially if you plan on treating within a few years. But remember that alcohol generally is not a good thing when it comes to HCV.

Anyway, HCV really weighed on me and in recent years I just felt "sicker" and as if the disease was really starting to grind me down (even with a liver that was in pretty good shape). So for me the time had come, I felt compelled to move on it. Twenty-four years is enough, not one more year if I had anything to say about it. And I treated at a major research hospital, that's the most likely place you'll be able to enroll in experimental drug trials. Anyway, that's more or less the long and short of it. Good luck to you..