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Deciding Whether to Treat Hepatitis C

March 2009

Deciding whether or not to treat hepatitis C (HCV) is an individual and complex decision. Some people really need HCV treatment now. It may be a bridge until newer, more effective and less toxic therapies are available. Medical need is one of several other factors to be taken into account.

You may know early on whether it is necessary to use the full course of HCV treatment. If it looks like treatment will not work for you after 12 weeks, you may decide to stop.

One doctor said: "people don't have to sign a binding contract to stay on hepatitis C treatment for 48 weeks. If they start, and it is much worse than they were prepared for, they can stop. They can try again in the future when they feel better, or when new treatments are available."

"Over the last seven or so years, as my general health has vastly improved, my doctors have warned me my health may be at more risk from HCV than HIV. I've been urged to have biopsies done of my liver and consider going on treatment for HCV. I've decided to delay embarking on therapy for two main reasons: firstly I have a genotype that is less responsive than others to therapy; and secondly I don't want to take time out from work which I'd probably need to do to accommodate the side effects. I like my life at the moment and I don't want that to change on the off-chance that I can clear the HCV. My current strategy is to wait until more effective drugs come along."

Another advocate who has been diagnosed with HCV for over 10 years said:

"For me, to maintain my CD4 high is a way of protecting my liver of histological damage. Side effects are the most important reason for delaying treatment as I have seen a lot of people on treatment and in some cases it is really hard. I also know people that are doing very well on treatment and avoiding the threat of cirrhosis is a really good thing. For me though, at the moment, I don't feel strong enough to try it."

Someone more recently infected chose earlier treatment, mainly to reduce the risk of sexual transmission to partners:

"Six months after treatment I feel very lucky to have achieved a 'sustained virological response'. I know of other people have not been able to stick to the treatment and others for whom it has failed. The doctors tell you that even if you don't succeed in eliminating it from your body, eleven months on treatment will put you in the clear of liver disease for years to come, but for me that would not have been enough.

I didn't care about the liver disease, but I needed to be not infectious. I had all the side effects during treatment and it truly was the worst time in my life but it was all worth it.

All the side effects went away as soon as I finished the treatment and I feel pretty much like my old self now."

Treatment tips

  • Identify people in your life who will be a good source of support for you.
  • Be prepared before seeing your doctor; make a list of questions in advance.
  • Take someone with you to appointments, particularly if there are psychological side effects that you need to discuss.
  • Consider joining a support group.

Advantages of using hepatitis C treatment

  • You can clear the virus.
  • Treatment can improve liver health by reducing inflammation. It may also reverse fibrosis. This can happen even in people who do not clear the virus, although less often.
  • It will stop the risk of passing hepatitis C (HCV) to sexual and drug-using partners.
  • Clearing the virus removes the risk of mother to infant transmission.
  • Treating HCV before starting HIV treatment will reduce the risk of liver-related side effects from HIV drugs later.
  • The treatment period is only likely to be 12 months, not lifelong.
  • Treatment may reduce the risk of long-term complications including liver cancer, even in people who do not clear HCV.
  • Treatment is less effective for people with serious liver scarring (cirrhosis), so it may be important not to delay treatment depending on the condition of your liver.

"After diagnosis, I was determined to have the treatment immediately ... but I had to leave the country for family reasons soon after starting the treatment and was unable to continue the treatment beyond the first month. A few years later when things had calmed down, my concern turned to my partner and I resolved to get rid of the HCV as quickly as possible."

Advantages of delaying hepatitis C treatment

  • The major disadvantage to treatment consists of the side effects and the impact it may have on your life during the period of treatment.
  • Occasionally, the side effects can be so severe that they could force you to stop treatment. In rare instances, you could be left with an illness after you stop treatment, such as thyroid disease or diabetes.
  • Some people have reported that the side effects have persisted, leaving them feeling unwell long after the end of treatment.
  • Treatment might not work for you.
  • There are many new drugs in development for HCV that may be more effective and be easier to tolerate These may be available through clinical trials in the next few years.
  • If your liver is healthy you may be able to delay treatment.
  • If you are thinking of getting pregnant in the next year, consider delaying treatment, since ribavirin causes birth defects.
  • Men and women should not conceive during treatment and for at least 6 months afterwards. Women who become pregnant on ribavirin must consider terminating the pregnancy.

"Talking to peers worked for me ... we have long exchanges as most of my friends are co-infected.

"But I also think that as co-infected people we might need to have some specific support group, especially as regards treatment issues -- and coping with treatment!

"I am squeamish and I thought I would never manage to self-inject. I asked to see the needles and when I saw how tiny they are I was reassured but still frightened. I asked the nurse do the first three and when it came to doing it myself I was thrilled to find that I could. It was painless and over in a flash.

This made me so proud that I almost wanted to do it twice!"

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This article was provided by HIV i-Base. It is a part of the publication Hepatitis C for People Living With HIV. Visit HIV i-Base's website to find out more about their activities, publications and services.