What stage is Tx recommended

Hey there,

I am curious as to when your doctor is recommending tx for hep c.
i have had it for 18 yrs.  i have geno type 1am, my second bx was last dec/07 which read that i am at stage 0 grade 1 still.  my first bx was in nov.02.  

My story - my doctor is not pushing tx yet.  i still may want a baby - i am 39 and will wait a couple of years but even if i did not have children in the next year or so, do you know if the doctors recommend tx for this stage and grade that i am in.

please share with me when it was advised that you go on tx.  what stage/grade and how they determined it.  again, my dr. is not pushing it right now...

thank you.

doggie

[mremeet]

This is a question similar to "how many angles can you fit on a pin?" Everyone has their own answer, and none of them are wrong. But most hep C knowledgeable people recognize that hep C is usually a very slow moving disease (without confounding factors like alcohol/drug abuse etc), and often has minor or no real symptoms. And because this is true, it's usually not imperitive to treat right away if minimal or no fibrosis is detected (as in your case). In fact, it's often desirable to withhold treatment for a wide variety of very good reasons, not the least of which is the side effect profile of current drugs, long duration of treatment and limited likelihood of being cured (especially for genotype 1). Most hep C knowledgeable patients with genotype 1+minimal fibrosis along with their doctors (in my opinion) are holding off on current treatment and waiting for something better to come along. And right now there are several "something betters" coming along which shorten treatment time and increase SVR rates significantly. I took one of the something betters (Telaprevir) last year and am now cured. Being that I was genotype 1 with minimal fibrosis (just like you) I had the luxury of waiting out better drugs. When they got to a point where I thought I had a really good chance of being cured, I made my move. I'm glad I did now, and my advice to you is to think along similar lines. Of course it's a very personal decision, but  your reluctance to treat now is very sensible in my view.

Best of luck whatever you decide.

[mremeet]

Um, as a correction above I suppose you could fit a lot of "angles" on the head of a pin too. But angles are usually superceded by "angels." Sorry if I was being obtuse.  ;-)

[mremeet]

Oh yeah I also forgot to say that the current Interferon based treatment can in some cases accelerate the onset of menopause in women. I don't have conclusive proof of that, but taking interferon (along with ribavirin) for a whole year can definitely affect your metabolic rate. It can accelerate the onset of and/or exacerbate various conditions and maladies that you may be predisposed to. So if you're a 39 year old woman, are still premenopausal and have designs on having children, then I'd *definitely* withhold current treatment. It could very well render you infertile when all is said and done. There is the downside of not treating and possibly communicating hep C to your child during birth, but the odds of that are quite low (from memory less than 10%, but you should check on that to be sure). But even if your child were infected, at this point in time there will in all likelihood be a reliable cure accessible long before the child experiences sigificant problems from the disease. Hands down in my opinion you should hold off until you get your child bearin' out of the way.

[mremeet]

Geez sorry for all these add on posts, but one more factor I also forgot to mention: ribavirin is carcinogenic and is known to damage sperm in men and eggs in women. Pregnancy (or male impregnation) is a big no-no during treatment. And although men and women are supposed to be able to have children again 6+ months after stopping treatment, it means a minimum of 1.5 year pregnancy blackout time (which is very significant when your a 39 year woman prior to treatment). And although I have no proof of this whatsoever, I'd suspect that the after effects of ribavirin (which again is carcinogenic) might make it slightly more likely for a child to be born with birth defects (even after the post tx  "grace period"). And considering that women close to menopause age are already more likely to give birth to children with birth defects (when compared to younger women), I wouldn't want that possible additive likelihood working against me.

[jmjm530]

I concur with much of what "Mre" has said. Everyone has their own tolerance points for starting treatment, including the doctors. That means some will treat with even zero liver damage and some will wait until stage 2 or even stage 3. The important thing is to become knowlegeable so you can make the decision that is comfortable for you. Meanwhile, if you decide to put off treatment (I would wait if in your position) make sure you see your doctor on a regular basis and get a biopsy (or the new Fibroscan device when available) every 3-5 years, or whatever your doctor might suggest based on his examinations.

All the best,

-- Jim

[jmjm530]

Just to clarify "and some will wait until stage 2 or stage 3" -- that is in reference to patients, not doctors. A good doctor -- IMO-- lays out the pro's and con's, will probably give their opinion, and then let  the patient decide.

[GrandmaA]

You are most fortunate to have stage 0. I'm green with envy. I wish I had that stage. You can wait for the new meds in 2009 or so. The tx time is supposed to be cut in half. Good luck with your baby plans. I think it's wonderful. You will make a great mother.

Take good care.

[Doggie]

thank you everyone.
i will wait and see about children and probably until my next bx which in 5 yrs would be 2010!
does anyone have a great website for the various treatments - one that defines the process etc.

[Dominic777]

Good luck on whatever you decide. I think mremeet and Jim gave you some good advice.

At the bottum of this page there is a link for "HCV Treatment".

[DAVMarine]

I just got a letter about my 1 st biop today to late to call my doc.It says the results were consistent with your history of Hep C,mild scarring of the liver was present which is not unexpected given your long history of Hep C.I'll try to find out more tomorrow as this does not mention a stage or grade anybody heard of mild scarring?I sure would like to wait till after the holidays to start TX.Thanks
Bob

[willing]

the following recent review from the journal of the american medical assn. summarizes the current "standard of care" (SOC)

http://tinyurl.com/2fx3wd

From the "Algorithm for testing and treatment" in figure 2 note that for stage
0-1 -> "no treatment recommended"
2   -> "consider treatment"
3-4 -> "treat"

also, I believe mre meant ribarivirin is a known teratogen, not that is a known carcinogen. While it would  expose your child to increased risk of  birth-defects/mutations were you to take it while pregnant, there is no known connection with cancer rates in patients. Given the teratogenic background and the fact that the drug sheet marks the carcinogenic studies as "incomplete", I've always been a bit suspicious of this. However,  by now a lot of riba has been prescribed and I'm not aware of any published connection with increased cancer rates, so those suspicions are likely only paranoia on my part.

[mremeet]

You're right, simplistically referring to ribavirin as a straight carcinogen wasn't quite correct (although from memory the package insert does warn of it being a possible carcinogen). But as you mention it is teratogenic and possibly mutagenic. And I agree, as far as I know there is no significant risk profile known at this time for the development of cancer or birth defects. But the bottomline is that ribavirin hasn't really been around all that long (in widespread use). It isn't even really conclusively understood how or why it works at eradicating HCV. Like many drugs, its possible long term side effect profile is not completely known due to the obvious and ever present research limitations of scope, ethics, time and money. My only point was to suggest that if (1) I were a 39 year old woman pondering treatment, and (2) I was considering the possibility of having children soon, I'd ponder the vaguest of possibilities when it came to potential pregnancy risks. Even if I had no concrete reason to believe that ribavirin would be likely to induce birth defects in my yet to be born child - the fact that ribavirin is such a potent drug that affects your body in such a profound way (which I know all too well at this point in time), I'd be leery that there may be some remote/vestigial risk imposed by the drug onto the proper development of my fetus. Totally unprovable, and probably very unlikely (assuming following the drug's minimal pregnancy safety guidelines). But just a whiff of risk would be yet another factor that would help steer me away from treatment prior to pregnancy (especially with the luxury of an F0 liver as in doggie's case). Especially so, since any attempt at pregnancy will probably have to come very shortly after completing treatment (especially if more than one child is planned). One thing's for sure, taking ribavirin and interferon (and all kinds of side effect helper drugs) for a year prior to getting pregnant certainly isn't going to enhance the possibility of having a birth defect free child...especially at age 40+.