personal experiences of hep c please?

Question

I have just called a helpline about hep c concerning my friend. The person on the phone was the most depressing person ever about treatment and recovery, he did not have it. H esaid the treatment is really rough and doesnt work in half of cases. basically give up and wait to die. any stories of hope out there about recovery and treatment. He also said that it is there for life, is it???

Answer 1

Stephanie, sorry you had such a terrible person on the helpline. Yes the treatment can be rough, but one's attitude about approaching it can make a big difference. The treatment is a mild form of chemotherapy, so there are side effects in most cases, but those side effects can be managed with drinking lots of water, having a positive attitude, and with the support of others. I recommend finding a local, in-person support group. There's nothing like being able to talk to others who have been through the same thing.
The treatment has a 50-57% chance of being effective if your friend is genotype 1 (the most common genotype in the US), and a 80% chance of being effective if he/she has genotype 2 or 3. Hep c is chronic in 80% of the people that become exposed to it; but if your friend does the treatment and is a sustained responder (still undetectable 6 months after treatment stops), then he/she has a less than 2% chance of it returning. Of course, your friend will need to stay away from any risk of being exposed again. Hep c is not a death sentence; most people die with hep c than from it. That is not to say it should be ignored; your friend should not drink alcohol, and should be vaccinated against other forms of hepatitis (A & B).
I work with a great support group, and have known many people over the last 6 1/2 years that have cleared the virus and are still undetectable. It is a chance worth taking, in my opinion. I cleared it in 2000, and have my energy back and my life back. As I said earlier, I'm sorry you had a depressing person on the helpline. Sometimes you have to "shop around" for a helpline or support group that is positive and really helps you. They are there. Try another one. Best wishes to you and your friend.

Answer 2

I contracted hep c when I received a blood transfusion back in 1985, two weeks after I was born. My pediatrician had me tested when the government issued a notice that anyone before 1992 that had received blood go get tested. Moving forward. I ended up going to Shands Hospital in Gainesville, FL. There I participated in a clinical trail sponsored by Schering-Plough Corporation Pharmaceuticals. I was on interferon and ribavirin for 18 months. Since completing the clinical trial my Hep C has been in remission. Yes the side-effects are bad, BUT they were only bad for the first night for me. I was giving myself shots 3 times a week with taking ribavirin orally. I was in middle school then. I've now been in remission for a couple of years, yes the virus can come back at anytime. It was well worth it. It's been twenty-one years, and I'm fine. best advice I can give you. Don't give up, most importantly always think positive. It's not a death sentence. If you are interested in getting into a clinical trail just go to
clinicaltrials.gov
and type in hepatitis c as your search criteria.
Good luck

Yes you will have hep c for life until a cure is found but scientists and doctors alike are making advances in hep c.

Answer 3

There are two companies making the pegalyted interferon that is used in the US these days. Roche and I think Schering. At any rate the one that goes by the name Pegasys and calls the ribavirin Co-Peg is the easier to tolerate interferon. It seems to also have a slight edge in effectiveness. There are some people who still get sick from it, and anemia is a possibility while on it, but it's down to 1 shot a week now where it used to be 3. Pegalyted interferon stays in your system longer, but is otherwise essentially the same as the old 3 shot / week interferon. I'm a poor one to talk to you about the interferon as I really had very mild and limited side effects while on the interferon. Mostly a worsening of the exhaustion that typically accompanies HCV, along with a little hair loss, rashes, and flu like aches & pains. I am a non-responder to the current interferon therapy though, so I don't know if that had anything to do with it. Most people I've talked with (as a HCV advocate / activist I keep in touch with many who have HCV) say that while not as bad as the old 3 shot treatment, they did have slightly more reaction to the interferon than I did. A few had bad reactions and therapy was discontinued. After getting off interferon many people notice some change in their body chemistry. I now shower twice daily instead of once because my skin seems to be either to acidic, or to alkaline, and I end up with a rash breaking out somewhere. I could get this treated by a dermatologist, but I'm really tired of taking all the pills I must take now. Besides the showers are refreshing. I also developed full blown type 2 diabetes, and it's been very difficult to control (although it is improving), where previously diet and exercise allowed me to control a pre-diabetic condition. My eyesight isn't what it was, but I still see ok with glasses, just not used to wearing them. The bottom line for me and so many that I've talked with is this: WE'd do it again in a heartbeat to get the Hep under control. This is voiced by most all I talk to. Regardless of what we've been through with the treatment and long term side effects. Most have lost a friend to this disease and would rather die fighting than let this disease have it's way. Pam Anderson is in for a real shocker if her HCV takes off again. There is no "live fast, die young, and leave a pretty corpse" with this disease. It strips away everything from a person in ESLD (end stage liver disease) including any pretense at dignity. The best way to deal with it is to get angry with it. Don't let your fear stop you from fighting this disease. Most often you will hear HCV carriers referred to as Hep C Warriors on the web sites, it is a battle. Never give up. We call it the Dragon, and we will slay it! It may end up taking my health, possibly my life, but never my resolve to fight back Join us.

Answer 4

I was exposed to hep c when I was given blood back in the 80's. They didn't screen for hep c back then, only HIV.
I found out that I had exposure when I donated blood. The blood bank told me that I had hep c. I didn't find out until years after the blood transfusion.
All that I can say is I have not been sick. The only thing that I will be able to warn you against is this: DO NOT GET THE HEP SERIES SHOTS WHEN THEY ARE OFFERED. You've already been exposed to the virus and getting these shots could really make you ill. When employment places offer this to me, I decline.
Other than that I lead a very normal life.

Answer 5

I don't have Hepatitis C but I work at an infectious disease clinic. The truth of the matter is that Hep C is a very serious disease. Many people with it live perfectly normal lives (even without being cured), but it also makes some people very sick. Since Hepatitis is a disease of the liver, your friend needs to stay away from drugs and alcohol, which can strain or damage the liver. This will also help his chances of eventually being cured.

Answer 6

I have hep c. I took interferon for 1 year. Although the meds made me feel like I was 100 years old, my hep c no longer shows up. It is not gone, just not active, At my age, 53, it was well worth it. THE last thing anyone wants is to have there liver fail. Slow death.

Answer 7

depending on your genotype it possible for up to a 65% chance of succesful treatment; the treatments can be tough but not all people have serious side effects I went through the ribavarin and interferon treatment with little side effects ; you will need a liver biopsy which is a simple procedure with little discomfort