Archived Q&A and Reviews

Hepatitis C treatment?

Oct 2004

Does anyone out there have any experience with Hepatitus C and any form of treatment, conventional or otherwise. My sister has been diagnosed with this ddisease,probably the result of a blood transfusion in the late 70s. She is terrified of the conventional treatment which is interferon, yet she is afraid to rely on alternative approaches, and has no information about alternatives. The doctor says the treatment has only a 50-60% chance of working. Yet she has been told that with not doing anything there could be anywhere from a 10 to 33% chance of serious damage to her liver. My sister has no liver damage so far, and no symptoms,except that her few muscle and joint aches could possibly be symptomatic for her. (She is 56 years old. As her 55 year old sister without Hepatitus, I have LOTS of muscle and joint aches.) We would appreciate any insights or helpful information that would help my sister decide how to treat her illness.

My younger sister has had Hepatitis C for a number of years. She had quite a bit of liver damage prior to the current treatment method of using interferon, and she was in line for a liver transplant. About 2 years ago she participated in a study using interferon. It made her quite ill; she said it was like having the flu for months, and she had to take off from work whenever she was doing the interferon treatments. She is the director of a non-profit in Arkansas. But it really worked. She's had a clean bill of health at all of her checkpoints the last 2 years. There is always the chance that things may change, so she will have to keep up with the twice-a-year checks all her life, but she feels great and is able to work and be productive. She said the interferon was pretty bad but the alternative is much worse. If you want, send me email and I can put you in touch with her.

I have both hepatitis C (HCV) and type 1 diabetes. I have decided to not do any conventional treatment for the HCV. With type 1 I have to pay attention to what I eat etc., so that works well for the HCV as well. Most of the time I feel healthy, I don't have any symptoms of liver disease, and my test results are normal or close to normal for both conditions. Not drinking alcohol is critical - so your sister would benefit from doing that (I'm sure her doctor told her). From what you've said, it seems that doing the conventional medical treatment would most likely cause more harm than benefit (since there are so many serious side effects). It is an individual choice, one that is difficult to make, but once I made it, I was at peace with it. Most peoplewho have HCV die with it, not from it. It can be quite serious, but given your sister's situation, as long as she continues to take good care of herself, it is likely that it will never be a major problem. (I'm not a doctor, I'm only speaking from personal experience.) Your sister needs to decide what is best for her with the advice of a good doctor. Alternative treatments like massage, chiropractic, and accupuncture can be very helpful. The biggest hurdle is dealing with the emotional issues related to having a chronic condition. I've found that psychotherapy has been the most helpful treatment of all. Melanie

There is a great website and free manual called ''Hepatitis C: Choices'' about the different treatment options for Hep C. (western med, chinese med, homeopathic, etc.) http://www.hepcchallenge.org/manual/sitemap.htm or http://www.hepcchallenge.org and click on the free download. (I think acupuncture and herbs can treat Hep C.) lori

I have a very good family friend that has Hep C from transfusion as well (Hemophelia). He started the interferon last year and before the treatment was through had no trace of hep C (He is also HIV+)!! He wouldn't be considered free and clear until 6 months after last treatment but that just passed and he has been classified as Hep C free!! He was VERY fortunate and had no side effects, this guy swims the bay every day, very healthy and was able to maintain that lifestyle while going through the treatment.

I also have three family members that do weekly interferon for MS. One cousin says that she has mild to moderate side effects the saturday after she takes the shot (every Friday afternoon). All of my relatives state that the side effects are mild enough that ibuprophen works..... LogicalMama

HEP C is a serious concern....as a nurse, i had an HIV+/HEP C positive needle stick, back before the ''cocktail'' of meds was available for HIV. i was much more concerned with the HEP C part than the HIV part I'd seriously consider the Interferon if it were my experience. Get a second opinion or a third of a virologist/immunologist. Blessings for and to your friend oonagh

I have some experience with Hepatitis C. It's a disease that kills some people (usually those who engage in high risk behaviors over long periods of time) while others can have it for decades, never experience a symptom, live a long life, and die of completely unrelated causes. The fact that your sister has no detectable liver damage and few, if any, symptoms is great news. I was told that I had Hep C after I donated blood about 5 years ago. I was experiencing no symptoms at all. A liver biopsy revealed some scarring in my liver. My gastroenterologist said that because the scarring was not severe, some doctors might say wait, do another biopsy in five years and see if the damage gets worse. However, he recommended that I do the combination interferon & ribaviron treatment, and I went ahead with it. I stuck with it for the full 48 months, and it was successful. The treatment was grueling and I have since come to understand that the success rate reflects the fact that many people start the treatment and do not finish. A small number of folks do not respond at all; since they monitor your blood monthly, this is discovered early on. I ended up having to take 9 months off from work, including 3 after the treatment was done. Fortunately, I had disability insurance, and my husband was able to really step up his childcare role (he took sole responsibility most of the time). So there's the good and the bad of my experience. I assume that your sister has seen a specialist since she must have had a liver biopsy to determine that she has no liver damage. Based on what my doctor told me, my guess is that my doctor would recommend that your sister wait and check her liver in a few years. She may be one of those who can live symptom-free for the rest of her life. On the other hand, I think it's probably better to go through the treatment when one is younger vs. older. If she chooses the treatment, I recommend that she try to arrange for disability insurance and a lot of support, particularly with childcare if she has young children. Best of luck. anon