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
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
- 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
- Clearing the virus removes the risk of mother to
- Treating HCV before starting HIV treatment will
reduce the risk of liver-related side effects from HIV
- The treatment period is only likely to be 12 months,
- 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
- 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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