The following patient situation has been written as an illustration of how hepatitis C might affect someone. Unlike Jane and Stephan’s case histories, this has not been written by someone with hepatitis C communicating their own experience. Additional factual information has also been added, in the form of a doctor’s notes. These stories may or may not be representative of the total HCV population and they do not necessarily represent the opinion of Tibotec. We hope that you find this an informative illustration of a situation that someone with hepatitis C might experience.

Three years ago my life was different. I had been promoted to senior management at work and I had a great social life. My wife and I were very involved with the local golf club, going to social events and competing regularly in tournaments. 

But after a while, I started to feel more and more tired. At first I thought age was just catching up on me. I didn’t go to the golf club as much and I kept finding new excuses not to go. In time, I couldn’t keep up with my commitments and I spent more time asleep. But as I approached my 50s, I justified it to myself that my body simply couldn’t do what it did when I was younger. 

My wife persuaded me that the way I was feeling wasn’t normal so I booked an appointment to see a doctor. I explained how I was feeling and the doctor suggested that I should have some blood tests. A few days later, I went back to the clinic and was told that I had tested positive for hepatitis C. I had not heard much about hepatitis C before and naturally had many questions. Most importantly, I wanted to know what was going to happen to me and whether I was going to die.

Most commonly, hepatitis C is a chronic condition, which means that it can continue to cause liver damage over a long period of time (decades). It can be present for many years without any symptoms at all (asymptomatic) and so is often called a ‘silent epidemic’. In some cases, hepatitis C can remain asymptomatic even after significant liver damage has occurred.

The doctor was very knowledgeable and answered all of my questions. She told me that hepatitis C was usually a long-term disease and that in some cases it could cause damage to my liver. She also told me that some people can experience complete liver failure as a result of hepatitis C, but that this can be avoided in most cases if caught early enough and managed correctly. I was extremely scared and overwhelmed at this point as it became clear that my life was about to change significantly.

The risk of significant liver damage increases the longer hepatitis C goes untreated. Liver damage occurs in the form of fibrosis, where the liver becomes scarred, and then more severely in the form of cirrhosis, which is largely irreversible scarring that replaces normal liver tissue and directly affects how the liver works. Cirrhosis occurs in up to 20% of people with chronic hepatitis C.

I learned that hepatitis C is caused by a virus and is spread by infected blood but there was nothing about my lifestyle that I could point to as a possible cause of my infection. When my doctor reviewed my medical history, she suggested that I had probably caught hepatitis C when I had a blood transfusion and life-saving surgery in the mid-80s. It never occurred to me that I could have caught hepatitis C over 20 years ago. In fact, it amazed me that I could have been carrying the virus for so long and not even known about it.

The hepatitis C virus is ‘blood-borne’, which means that people are infected through direct contact with infected blood.

The most common ways in which hepatitis C is spread are by receiving infected blood or blood products (for example, blood transfusion before 1992) and by sharing needles and syringes when injecting drugs.

Soon after my diagnosis, I tried to learn as much as I could but it took me many months to come to terms with hepatitis C. However, I was keen to do what I could to protect others. My wife was a great help and she also had a test just to be sure, but thankfully it was negative. And for my family, I started to look after my own health by finding more time to rest and giving up alcohol completely.

Drinking alcohol can lead to more severe liver damage and higher levels of the hepatitis C virus in the body. By eating a healthy diet and not drinking alcohol, you can help your body to fight the hepatitis C virus and help yourself to feel as well as possible.

I was then referred to a specialist and I had more tests, which included a biopsy to get an idea of how badly my liver had been damaged. The tests showed that I had genotype 1a and that my ALT levels were also higher than they should have been. My biopsy showed that I had signs of fibrosis, meaning that I had already suffered some liver injury.

A liver biopsy may also be performed as this is a more accurate way to assess how damaged somebody’s liver is. It may not always be necessary to perform a biopsy, but the doctor’s decision will depend on many factors, including virus genotype. Liver biopsies are carried out under local anaesthetic and generally don’t require an overnight stay in the hospital. A small piece of the liver is removed using a needle and sent to be examined under a microscope. The results are graded depending on how much inflammation and scarring there is. 

After the initial tests, I was told that I was eligible to receive treatment and that I should start to consider my options. If I wanted to start it, I could get combination treatment with pegylated interferon and ribavirin.

Patients are usually treated with a combination of two different drugs, pegylated interferon and ribavirin. Pegylated interferon is delivered by injection once a week; ribavirin comes in tablets form and is taken twice a day. The pegylated interferon is injected just under the skin by the patients themselves or by a nurse.

Combination therapy with pegylated interferon and ribavirin is the most effective treatment currently available. However, a few patients cannot take ribavirin and, therefore, they may be prescribed interferon on its own, which is known as monotherapy.

Hepatitis C can be cured. However, it is common for the drugs prescribed to get rid of the hepatitis C virus and prevent liver damage to cause side effects. These side effects can include, but are not limited to:

• Fatigue
• ‘Flu-like’ symptoms
• Nausea (feeling sick)
• Anaemia (low numbers of red blood cells in the blood)
• Depression
• Itching
• Skin rashes
• Hair loss.

My treatment was supposed to last for 48 weeks but it was stopped after about 4 months. The monitoring tests showed that my viral load hadn’t changed and so I hadn’t responded to the drugs at all. I wasn’t coping well with the side effects and the doctors said that my viral load should have dropped by that time if I was ever going to achieve an SVR.

A hepatitis C virus infection is said to be cured when the genetic material (RNA) from the virus cannot be detected in the patient’s blood immediately after the end of treatment and then another six months later. This is known as a sustained virological response (SVR). 

Some patients will not respond to treatment (non-responders). Other individuals will have an undetectable level of the virus in their blood during treatment, only for the levels to rise again after the treatment has been stopped (relapsers).

Even before I started treatment, I knew that my chances of success were lower than for other people with hepatitis C. I was infected with HCV genotype 1a, which has a relatively high level of resistance to the current drugs and is only cured by treatment about half of the time. After being taken off treatment, the doctors were considerate but reminded me that there was very little chance of success if I was to be re-treated with pegylated interferon and ribavirin.

Combination therapy with pegylated interferon and ribavirin is the most effective treatment. The success rate varies depending on the genotype of the virus. Success rates are higher (about 80% of patients have an SVR) with genotypes 2 or 3 than with genotypes 1 (about 40–50% of patients have an SVR).

At the moment I am not receiving treatment for hepatitis C as I am not ready to go through it again just yet. For the future, the doctors have told me that there are minor adjustments they could make to adapt my previous treatment regimen, but there are no guarantees as to whether they might work and the side effects might be the same.