Side effects and management strategies

Man not sleeping The side effects from hepatitis C (HCV) treatment can be difficult, and, rarely, even life-threatening, and occur more often in people who are HIV-positive. The information in this section includes ways to manage these side effects.

With the right planning and support, the impact of side effects can be reduced. Ask your doctor how he/she will treat your side effects. Support from other people with HCV, friends, and family before and during HCV treatment plays a key role in coping with this difficult aspect of treatment.

I stayed at work during the whole of the treatment, and while this was difficult mentally and physically, I think it was the best thing. Too much time on your hands is a bad thing when you are taking a treatment that fucks with your head. I was able to have quite a few sick days and an easier work schedule by telling the occupational health doctor at work what I was going through. Fortunately, he was not obliged to go into the details of my illness with my line manager, so my confidentiality was maintained.

I think that to be informed about the disease is the best support that you can have initially. To have a real picture of what is going on can be the more helpful to avoid fear and anxiety. On the other hand, support and counselling are essential when deciding to start treatment. The treatment can have very disturbing side effects and to be informed about them and how to manage them is crucial for a better chance of success. This is especially true regarding physiological disorders. I also think that peer support is very useful.

It is difficult to consider taking a treatment that, in the long term, may help me – but it's going to make me very sick in the present.

Liver toxicity and HIV drugs

HIV meds and liver toxicity

Many HIV drugs are cleared from the body by the liver, and have the potential to cause liver toxicity, and hepatitis C coinfection increases the risk by 2-3 times. This could be through the direct action of the drugs themselves.

This is largely a concern with nevirapine (an NNRTI), tipranavir and higher doses of ritonavir (both PIs) – which can be managed by choice of alternative HIV drugs. The use of low dose ritonavir to boost other PIs does not seem to increase this risk.

It could also be through an indirect action related to higher drug levles of NNRTIs and PIs, especially if you have serious liver damage. Because a damaged liver is working less efficiently, drug levels can be higher and take longer to clear from your body.

Therapeutic drug monitoring (TDM)

TDM in the UK is available from Liverpool University.

Therapeutic drug monitoring (TDM) is a blood test that checks blood levels of a protease inhibitors, NNRTIs, and possibly T-20.

Doses for HIV-drugs are worked out for an average person. However, individual differences in absorption can vary considerably in real life. In people whose liver is seriously damaged, drug levels can be much higher. This can increase the risk of side effects.

TDM is available free in the UK for many people using nelfinavir, saquinavir, indinavir, fosamprenavir, atazanavir or lopinavir/r through programmes sponsored by the manufacturers.

Even if your clinic has to pay for a test, it will only cost around £40 per drug.

TDM is recommended in UK BHIVA guidelines for management of dosing in people with moderate or severe hepatitis C related liver damage.