Deciding whether to treat hepatitis C

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.