Gynotype 1a Stage 0

Hi Star. Welcome back. Many of our members have experience with Hep C and should be able to give some advice.

My partner has had Hep C for over 40 years. He moved from Stage 1 to Stage 4 over the years and that progression was accelerated by alcohol use. The Hep C spawned an HCC (Heptocellular Carcinoma) in 2011. At End Stage he was eligible for transplant and was transplanted May 1, 2011 after a long and serious declince in 2009 and 2010. His Hepatologist from Mt Sinai in New York gave him longer progression time IF IF IF he would quick drinking. He did not until very late in the disease progress.

After transplant, he still has Hep C. He faces the decisions you do...treatment NOW or treatment if/when he gets bad again.

He took the 2 drug combo (Interferon and Ribavarin) in 2003. He did not clear the virus and was very ill from the side effects...low blood counts, etc etc.

He lost a lot of wt at that time also.

The clearance rates were low for 1a on combo treatment, though we have heard the clearance rates are much higher for those with early stage scarring. So, the stats should be good for you too. Mike has to consider that when making a decision to have treatment now.

The new combo drugs are having MUCH higher treatment success. However, even those with sustained viral response, are not necessarily clear forever. Some have relapses down the line.

The waiting is for treatments that are not combos with pegalated Interferon, which is thought to cause the side effects. I'm not a doctor, so I don't know the true facts there.

I think the key is to be working with a Hepatology department at a major medical center where they do transplants and if you trust their recommendations, go for it. Even if you just slow the progression down even more, it would be worth it. When Hep C does its evil deeds at late stages there is no treatment, bar transplant, to save your life!!!!

Keep us posted on what you decide and how you do. Others waiting to start treatment will want to hear from you every step of the way.

Best,
Mama Lama

Post Edited By Moderator (hep93) : 8/9/2012 7:35:33 AM (GMT-6)

What are the drugs they want you to take?

Star, yes you do have to take all 3 in order for them to work. The new treatment with 3 drugs is showing a 75-90% clearance rate--pretty good odds! However, as was mentioned, there are trials being done of a treatment WITHOUT Interferon. If you'd rather wait until that becomes available, you could probably do so safely at a Stage 1. They never did staging at Mayo--or at least didn't tell me. You either had hep C or you didn't. I am now waiting to go on the 3-drug treatment, but have had several complications since transplant. They want everything to be okay before starting me on treatment. I am VERY fatigued all the time and could probably sleep around the clock if I let myself.

Hugs,
Connie

The interferon shots are easy and they don't hurt. The effects from them and ribavirin suck (like a prolonged case of the flu), and I've heard the protease inhibitor makes a bowel movement feel fiery. You need to make up your mind to follow through with the treatment and rid yourself of the virus. A good mind set makes a huge difference. If you think you can't do this, you will likely quit, so, be sure before starting. It's worth the discomfort to be free of Hep C. The rhyme was unintentional.

Thanks everyone, I am in the process of finding out how much the meds will cost with my insurance to get a better idea. So hopefully I will be starting sometime in September- October. I think I have just gone to the wrong sites and read a lot of scary things that all of the meds can do to you. Should I start a new thread on what all the medications may or may not do to you. i.e. other symptoms or other new problems that may occur to my body?

I'm 34 and was a intravenous user. All I know is what the paper work says and it says 0, no fatty liver, no fibroses, or cirrhoses and my iron was good. I really don't understand how that happened but by the grace of god it was good. I know with anything that with age will degrade with time.