"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."
"I think that to be informed is the best support. Having a real picture of what is going on can help to avoid fear and anxiety. Support and counseling are essential in deciding to go into treatment. The treatment can have very disturbing side effects and to be informed about them and how to manage them is crucial for having a greater chance of success, especially physiological disorders. I also think that peer support could be very useful in these situations."
"It is difficult to consider taking a treatment that, in the long term, maybe it's going to help me -- but it's going to make me very sick in the present."
The side effects from hepatitis C treatment can be uncomfortable, sometimes debilitating, and, rarely, even life-threatening. People who are coinfected with HIV and hepatitis C may have more severe side effects. There are ways to manage these side effects.
It can be very helpful to talk with people who have been on hepatitis C treatment, and to ask your doctor how he/she will treat your side effects.
With the right planning and support, many side effects can be managed. Support from other people with HCV, friends, and family before and during HCV treatment plays a key role in coping with side effects.
Depression and anxiety are commonly reported side effects of interferon treatment. In rare cares, people have reported that they have felt like taking their own lives, and a few people have committed suicide during their HCV treatment. People with a history of depression are at greater risk for developing these side effects during HCV treatment, although depression and anxiety have also been reported in people who never experienced them before. Interferon can also cause irritability, insomnia, mania, mood swings, and psychosis.
It's important to have access to mental health care before and during HCV treatment, so that psychiatric side effects can be treated promptly and appropriately, if it becomes necessary.
Starting an antidepressant before going on HCV treatment can help to prevent depression from interferon.
Antidepressants and other psychiatric medications have their own side effects, so other experts think it is better to provide these drugs only if and when people need them.
It is important to correctly diagnose and properly treat psychiatric symptoms of HCV treatment.
Flu-like symptoms (fever, aches and pains, headache, chills, and nausea) are common side effects of interferon.
Taking the pegylated interferon shot in the evening helps, as does a low dose of acetaminophen and anti-nausea medication and/or dronabinol (also called Marinol, a derivative of marijuana).
Drinking plenty of water helps to lessen flu-like symptoms.
Weight loss often occurs during HCV treatment, because people may lose their appetite, have diarrhea, and/or feel nauseated. If possible, eat many small, light meals to keep energy up. Dronabinol may help to stimulate appetite.
D4T (stavudine) should not be used as it can increase fat loss when used with ribavirin.
HIV-positive people may have low white and/or red blood cell counts; neutropenia, anemia, and thrombocytopenia sometimes develop in persons with advanced HIV disease. Regular monitoring of white and red blood cell counts during HCV treatment is especially important for coinfected people, since they are at greater risk for anemia, neutropenia, and thrombocytopenia.
Anemia (an abnormally low red blood cell count) is a side effect of ribavirin, and pegylated interferon can also cause anemia because it suppresses the growth of bone marrow, where blood cells develop. The most common symptom of anemia is fatigue. Anemia is a common problem for HIV-positive people, and can be caused by AZT. If possible, coinfected people should avoid taking AZT, especially during HCV treatment. Both AZT and ribavirin can cause anemia, and combining them increases the risk. Combivir and Trizivir both contain AZT.
There are two ways to treat anemia due to ribavirin. One strategy is to lower the dose of ribavirin, but HCV treatment may not work as well. The other is to treat anemia with injections of a red cell growth factor called Epogen, which improves fatigue and helps people to stay on ribavirin. Severe anemia is treated by blood transfusions, but this can be avoided by reducing the ribavirin dose or starting red cell growth factor if anemia develops during HCV treatment.
Neutropenia is an abnormally low amount of neutrophils, the white blood cells that fight bacterial infections. Pegylated interferon can cause neutropenia. The risk of developing bacterial infections is increased in people with neutropenia. If the neutrophil count drops during HCV treatment, the dose of pegylated interferon is reduced, or neutropenia is treated with injections of white cell growth factor called Neupogen.
Thrombocytes are platelets that help stop bleeding by clotting blood. Thrombocytopenia (low platelet count) can be caused by serious liver damage (because platelets are made in the liver). It can also be caused by other medical conditions, including HIV itself, and by pegylated interferon. Severe thrombocytopenia can have life-threatening consequences, such as intracranial hemorrhage. If severe thrombocytopenia develops during HCV treatment, it is usually discontinued.
Although interferon can cause a temporary drop in your CD4 count, (but not your CD4 percentage), the three major HCV treatment trials for coinfected people did not find more opportunistic infections (OIs) in people with low (under 200/mm3) CD4 cell counts.
There have been some reports of Candida esophagitis (a fungal infection of the esophagus), and tuberculosis among coinfected people during HCV therapy. In some cases, prophylaxis (drugs that protect against certain OIs) may be recommended.
CD4 cell counts usually return to the pretreatment levels within a few months after HCV treatment has ended.