Guidance

Hepatitis C: information for patients

Updated 25 November 2020

Hepatitis C, also called HepC or HCV, is a virus carried in the blood which infects and attacks the liver and can be fatal.

What your liver does

Your liver has hundreds of jobs – including fighting infections and diseases, removing waste products, cleaning your blood, producing lots of substances including hormones, proteins and enzymes which your body uses to keep you well and repair itself.

What hepatitis C does to your liver

Hepatitis C causes inflammation in the liver that leads, very slowly, to damage which eventually forms scars. This is called fibrosis and in most people with hepatitis C it takes many years to develop without symptoms so people often don’t know it is happening. Over time, usually up to 30 years, this can lead to cirrhosis of the liver. With cirrhosis, the liver becomes scarred, hard and bumps form. The shape of the liver changes and this changes the way blood flows through the liver, which can lead to bleeding into the gut. Cirrhosis can also lead to liver cancer. When cirrhosis develops, your liver starts to run out of normal cells and can stop working – also known as liver failure.

If there is a small to medium amount of damage the liver can repair itself. However, if there is a large amount of damage from severe cirrhosis or cancer, the liver cannot repair itself. When there is a large amount of irreversible liver damage, a liver transplant (new liver) may be an option – this would be discussed with your doctor or nurse.

Liver failure

When your liver stops working, you experience some or all of the following:

• feeling constantly tired and having no energy (fatigue)
• yellow colouring of the skin and the whites of the eyes (jaundice)
• confusion or brain fog – not being able to remember simple things (hepatic encephalopathy),
• fluid retention in the stomach and ankles (ascites at the abdomen, oedema)
• internal bleeding (major bleeding from swollen veins in the gullet (varices)

For some people, a liver transplant will cure liver failure, for others it cannot be cured.

Treatment for hepatitis C

Your doctor will give you tablets to take for up to 12 weeks, although some medications only need to be taken for 8 weeks. You need to take all your tablets otherwise the drugs may not work properly and you could still have the disease.

There are at least 6 types of hepatitis C and the doctor will give you the tablets suitable for your condition. Most people do not experience side effects.

The drugs work for around 9 out of 10 people. Blood tests will show whether or not the virus is still present. You will have one blood test after your last treatment and another 12 or 24 weeks after that. Your nurse or doctor will advise you about how to avoid reinfection.

If the medication doesn’t work for you, speak to your healthcare professional about other treatment options.

How hepatitis C is spread

Hepatitis C is a blood borne virus which means you have to come into contact with blood from someone else with the disease to contract it. It only takes a very small amount of blood for the virus to transfer, for example, on a razor or a toothbrush. Other ways include:

• through open cuts, wounds or scratches
• via blood transfusion before September 1991 or via NHS blood products before 1986 in England^{[footnote 1]} (after this all blood is screened)
• sexual transmission if you pass on blood during sex
• from infected mothers to babies
• dental treatment, injections, or tattoos if done with unsterilised equipment – mainly abroad
• injecting drugs (including steroids)
• sharing any drug injecting equipment such as needles and tourniquets

If you think you may have hepatitis C

You need a blood test. Visit a GP or if you don’t have one or don’t want them to know, GUM clinics offer walk-in services with no need to have a GP. If you attend community drug services, they can also do the blood test. The Hepatitis C Trust can also advise on how to get a test in your local area.

Around 1 in 5 people need no treatment and can get rid of hepatitis C on their own. Make sure you get a blood test to check.

Your doctor will make sure that the correct test is carried out to check that you do not have hepatitis C now, as some tests for hepatitis C stay positive even after you clear the virus.

Informing people you’ve got hepatitis C

You need to tell anyone who could come into contact with your blood and could also be infected. Your healthcare professional or the Hepatitis C Trust can advise you.

Where to get support

Contact your GP. If you don’t want them to know or don’t have a GP, the Hepatitis C Trust is staffed by people who have had the disease and can offer you help and support. The British Liver Trust can also help.

1. In Scotland, before October 1985 for Factor IX and before April 1987 for Factor VIII. ↩