choosing not to treat?

[GordsGal]

Anyone here with Hep C choosing not to get treatment? I tried 5 years ago.....didn't complete..gave up after 4 months due to unforseen stressful family events....now I'm thinking maybe I should try again but i got so sick the first time around I kinda don't want to go there again.  and i worry if the tx will bring on other conditions and disorders.

[eureka254]

Yes, my husband did decide to treat after a year of telling his hep doc "no."  He's currently in week 54, and yes, stage 4 is very serious -- it's a condition known as cirrhosis -- his liver is such that it's ability to regenerate is questionable. It is the the last stage before ESLD (end-stage liver-disease, or liver failure), and we were informed that at stage 4, treatment could be dangerous as well as beneficial.

Alcohol is known to be one of the factors that accelerates liver damage, so it's a wise move to be abstinent -- hopefully your results will be good, and a move to a healthier lifestyle is certainly a move in the right direction.  Keep us posted; this forum can help you navigate the 'hep c' process as you go through it, just as it did my husband and me.  Best of luck. ~eureka

[GordsGal]

Did your hubby change his mind to get treated,,,stage 4 sounds very serious....5 yrs ago I had a biopsy and was at stage 1...now I don't know what stage I'm at as I have been drinking beer for the past few years after being abstinate for almost 20 yrs. I have decided not to drink anymore and to become healthy again..which is why I am here...I am awaiting blood results and ultrasound and possible biopsy to see how much damage i have done....shame on me.....but i'm on the right track now...treatment or not.

[eureka254]

When my husband was diagnosed in 2007 he chose to wait.  Initially, when the doctor encouraged him to treat and he learned about the side effects, his answer was a flat out "no way."  However, over the course of the next year and a half, he learned more about what his Stage 4 liver disease could do long-term.  (I should mention his bloodwork was not at all suggestive of cirrhosis -- for the most part he had near-normal markers across the board -- so bloodwork is not always a reliable indicator of your liver damage.)

It's a tough balance, no doubt:  weighing what might come of treatment against what might come of hep c progression.  One of the most important factors in deciding on treatment is an accurate assessment of your liver health -- if you have not had a liver biopsy, that would be an important test to pursue.  (Ultrasound is useful in detecting liver lesions, but not so much in determining liver damage.)

The "latest" standard of treatment is still 48 weeks or longer for genotype 1s, but if it's in your cards to 'watch and wait awhile', the buzz is that newer, shorter, more successful treatments will be rolling out in the next couple of years.  Welcome to the forum. ~eureka

[newleaf09]

Go to the janis & freinds site.  It is packed with info about HCV and HCV treatment.  Some will scare you a little (like the info on cirrhosis) but it's worlds better to know what the test results mean and the ins and outs of treatment.  Bone up before you get there and you can be a real help to your boyfreind.

[Djos]

wow, thanks for all the information. Im trying to get my boyfriend referred to a liver specialist for his very recent diagnoses. I will be going to his appointment, so am compiling some questions and trying to inform myself as much as possible.

thanks.

[GreatBird]

The problem with choosing not to treat is that it doesn't allow for change . . . for better meds to come along, for changing life circumstance that makes it easier to treat, for the liver to become more fibrotic and diseased.

I found out I had HCV in 2002. I treated for the first time this year. I did not ignore my condition during that seven years. What I did was watch and wait.

Watching and waiting means getting blood tests every six months and handling whatever might come out of them. It means getting a follow-up biopsy in 3-5 year intervals. It means getting regular ultrasounds. It means taking *very* good care of your liver: no alcohol, fried foods, artificial ingredients, etc. It means taking supplements if that is something you believe in.

If you've been sick for the past 10 years, I'm wondering why you won't try treating again? During my watch and wait period I felt very healthy.

Today I'm just coming off a clinical trial for boceprevir. I've been UND since week 10. I had almost no response on the four week SOC lead-in, but my VL crashed with the introduction of the trial drug. This doesn't mean I will stay clear, but it sure was a good sign. :)

I encourage you to look at what's coming down the pike. They are coming up with 24 week treatments for geno 1's. These drugs look like they will be available in 2011.

[GordsGal]

Thanks for the input all...It's good to hear the feedback here where people are going thru the same. I go for major bloodwork this morning and I have a ultra-sound booked for nov 27. I will await results, continue to post here and yes make a more educated decision. also I guess i should find out what the latest treatment that is available....the last time I was taking Peg a something or other...lol   I have geno type 1B and if my calculations are correct I've had Hep C for over 25 years and have been sickly for the past 10.......am sick of being sick.

[Mary4now]

Ha approaching 50, I am now 60 (hard to believe for me) anyway, I am waiting to hear about a study, because I do not have insurance, I have geno 1 and I would like to treat with the PI, so I'm waiting,,,,, scary as it all is,...
M

[Andiamo1]

I think enzyme levels are not good predictors of when you might end up with end stage liver disease.  The best predictors, and these are not infallible, are age, stage of fibrosis and length of time infected.

[newleaf09]

I'd say it should depend upon your liver enzyme levels, other bloodwork like platelets, AFP and Akaline phosphatase and, if possible, biopsy results,  It's possible to live your whole life with the virus, but not without keeping careful tabs on what it's doing to your body.  I second Andiamo in that the protease inhibitors can reduce treatment time to 28 weeks if you are responsive to them; that's 20 weeks less worry about any possible side effects from the standard immunotherapy (which is used along with the protease inhibitors).  Those new drugs are rumored to be available in 2011.

[Andiamo1]

People do choose not to treat.  There are  some people on the forum that make that decision, but anyone that does, need to make an educated decision based on the current stage of their liver, age and general health.

Their are many new drugs about to come on to the market and these drugs will improve the odds of SVR in a shorter treatment time. ANYTHING that reduces the time on interferon is a good thing in my book.

If you are approaching cirrhosis and your age is > 50, you don't have much time to wait.  There are a number of studies that show fibrosis progresses more rapidly with age.  These are statistical results, so some people will fall outside the norm, both on the good and bad side of the norm.

I wish you best of luck with your decision and your outcome.