INFORMATION ABOUT HEPATITIS C

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1 INFORMATION ABOUT HEPATITIS C PATIENT BOOKLET

2 Index 1 About Hepatitis C About Hepatitis C Page 1 Hepatitis C Transmission Page 3 Hepatitis C Disease Progression Page 4 Hepatitis C Diagnosis and Treatment Algorithm Page 6 Hepatitis C Testing and Investigations Page 8 Hepatitis C Treatment Page 12 Diet and Lifestyle Page 17 This booklet was written with the assistance of: Dr Frank Weilert Gastroenterologist and Hepatologist Waikato District Health Board, Hamilton Dr Catherine Stedman- Gastroenterologist and Hepatologist Canterbury District Health Board, Christchurch Assoc Professor Ed Gane Hepatologist Auckland District Health Board, Auckland Janice Duxfield Hepatitis Nurse Specialist Auckland District Health Board, Auckland Hepatitis means inflammation of the liver. Usually it is caused by a viral infection. There are several known viruses that can cause hepatitis. These include Hepatitis A, B, C, D, and E. Hepatitis A and E viruses are spread through contaminated food and water. The hepatitis B virus is mainly spread by transfer of infected blood and other body fluids from one person to another. The hepatitis C virus is carried in the blood and can be passed on through blood to blood contact. It is estimated that there are approximately 50,000 New Zealanders infected with the hepatitis C virus, with only 25% aware that they are carrying the virus. Many people with hepatitis C do not know they are infected as the disease often progresses slowly over many years without noticeable symptoms. Common symptoms include fatigue and abdominal pains. Chronic hepatitis C can cause damage to the liver (scarring or fibrosis). Over many years, this may progress to cirrhosis which may lead to liver failure or liver cancer.

3 3 Hepatitis C Transmission The hepatitis C virus (HCV) is carried in the blood, and can only be passed on through blood-to-blood contact i.e. the blood of an infected person enters the bloodstream of an uninfected person. The following is a list of how people can be infected with hepatitis C: Sharing of needles and drug equipment during injecting drug use Non-sterile tattooing and body piercing equipment Previous or current imprisonment Blood transfusions or use of blood products prior to 1992 Haemophilia At birth from mother with hepatitis C infection The risk of spreading hepatitis C through sexual intercourse is very low and the only significant risks are traumatic sex or sex during menstruation. Please note that hepatitis C is not spread through cooking, eating or bathing with a person that is infected with hepatitis C. Other personal contact such as hand shaking, hugging and kissing is also safe.

4 4 Hepatitis C Disease Progression Most people have no symptoms when they first get hepatitis C. Overall, 20% of people who are infected will clear the virus on their own (acute hepatitis C) with the other 80% developing chronic hepatitis C (long-term infection). Progression of Hepatitis C Over Time For every people infected with the hepatitis C virus will develop chronic infection will develop chronic liver disease will develop cirrhosis will die of cirrhosis or liver cancer Chronic Infection The majority of people who develop chronic hepatitis C do not tend to have any symptoms. They remain unaware that they are infected until they are tested. They may feel tired and lethargic, and experience other non specific symptoms like; loss of appetite, nausea and a sore stomach. During this time the virus may slowly be damaging the liver causing scarring or cirrhosis. Cirrhosis develops in up to 20% of people over time. Once cirrhosis has developed, up to 5% will die from liver cancer or liver failure. For people who were infected with hepatitis C through injecting drug use the risk of cirrhosis is 20-30%, and 5-10% will die or need a liver transplant for liver failure or liver cancer. Chronic hepatitis C is now the most common reason for liver transplantation around the world including New Zealand. Acute infection Acute hepatitis C occurs around 4 to 12 weeks after becoming infected. This is a mild flu-like illness with a loss of appetite, vomiting (sometimes) and an upset stomach. This may be followed by jaundice (the whites of the eyes look yellow and urine becomes dark), and a sore stomach.

5 6 Hepatitis C diagnosis and treatment algorithm Positive Positive At risk of hepatitis C infection Blood test for HCV antibodies Blood test for HCV Viral Load PCR Referral to hepatitis clinic (Specialist, doctor and hepatitis nurse) Further blood tests required eg: Genotype identificaton, Fibroscan/liver biopsy Negative Negative Genotype 1,4,5,6 Genotype 2,3 Is it possible infection occured <6 months ago? No further treatment needed Treatment with pegylated interferon plus ribavirin for 48 weeks Treatment with pegylated interferon plus ribavirin for 24 weeks No Yes No further treatment needed Negative In 3 months perform HCV Viral Load (PCR) Positive If viral load is positive at week 12 then treatment may be stopped If viral load is negative at week 4 then treatment may be reduced to 24 weeks 6 months after treatment, blood test for HCV Viral Load PCR Positive Negative Treatment has not been successful You are cured of hepatitis C infection

6 8 Hepatitis C Testing and Investigations If your doctor suspects you are infected with the hepatitis C virus you may be sent to have some blood tests. The first is the antibody test and if this is positive then a viral load PCR blood test will also need to be carried out. (Refer to page 6) Hepatitis C Antibody Test This is a simple blood test to detect antibodies made by your body to fight the hepatitis C virus. A positive test says that you have been infected with the hepatitis C virus at some time. Another blood test (viral load PCR) is needed to confirm that the hepatitis C virus is actually present in the blood. For people recently infected with hepatitis C, this test may show up negative, as it takes our bodies at least three months to develop antibodies against viruses. A viral load or PCR blood test will need to be performed after three months. Liver Function Tests (LFTs) Liver function tests are a series of blood tests used to identify how well the liver is working. They can also determine if the liver has suffered any cell damage, however they cannot tell you what has caused the damage. Almost one third of people with normal LFTs can still have severe liver disease. Alanine aminotransferase (ALT) ALT is an enzyme that is normally present in liver cells. When liver cells are damaged, the enzyme leaks into the blood stream causing blood levels to rise. Raised ALT levels indicate liver cell injury only at the time of testing. Aspartate aminotransferase (AST) AST is another enzyme that leaks from injured liver cells. Blood levels fluctuate in relation to the extent of cell damage. Please note that both ALT and AST can be inaccurate indicators of the actual level of damage to the liver. Viral Load/Polymerase Chain Reaction (PCR) Test A PCR tests for the presence of hepatitis C in the blood and can determine whether or not you have an active hepatitis C infection. It can also measure the amount of virus in your blood (viral load) and can determine the type of hepatitis C strain (or genotype) that you have. There are six different hepatitis C genotypes (1-6).

7 Other Tests If your initial tests suggest that you are infected with hepatitis C, you may be referred to a specialist doctor at your local hospital for further tests. These tests may include: Liver Biopsy Your doctor may then ask that you spend some time with the hepatitis nurse specialist so that you can obtain a better understanding of what it means to be infected with hepatitis C and what the treatment program will include. A liver biopsy involves collecting a small sample of tissue from the liver by passing a thin needle through the skin on the right side of your chest. The sample is examined for signs of structural damage and the amount of scarring and cirrhosis of the liver. The biopsy procedure is simple and considered relatively safe. It requires remaining in hospital for 4-6 hours and not returning to work that day. Some pain will be experienced after the biopsy, which does not last long and pain relief is provided. Liver Ultrasound Scan This is a special test to check the size and shape of your liver. It does not hurt and is safe. It is used to see if there are any complications of cirrhosis and may be used for monitoring in the more advanced stages of liver disease. It is usually used at the time of a liver biopsy to determine the best site for a tissue sample. Fibroscan A fibroscan is an alternative to a liver biopsy for measuring the level of damage to the liver. A hand-held probe is held against the abdomen and sends ultrasound waves through the skin to the liver. This is performed at the hospital and there are no after effects and you can return to work that day. Fibroscan is only available in some hospitals. Fibroscan

8 12 Hepatitis C Treatment Ribavirin Ribavirin has no direct effect against the hepatitis C virus but helps your immune system fight the virus, in combination with pegylated interferon. Ribavirin is taken twice daily, by mouth in tablet form. Many people with chronic hepatitis C do not generally feel unwell, so may not feel the need for treatment. However, even though liver damage occurs slowly, if you wait to have treatment, the success rate can decline. If you are considering treatment then you need to discuss your treatment options with your doctor. Treatment aims to do two things: 1. stop the virus multiplying, and cure the infection if possible. 2. stop the virus damaging the liver, thereby preventing liver disease to worsen, liver failure and liver cancer. Interferon Interferon is a natural protein found in your body that fights off viral infections. Unfortunately your body can t make enough interferon on its own to kill the hepatitis C virus. Pegylated interferon plus ribarivin is currently used to treat hepatitis C. Treatment Outcomes Cure rates with the treatment of pegylated interferon plus ribarivin vary according to which genotype of the hepatitis C virus you are infected with. If infected with genotype 1 or 4 then approximately 5 out of 10 people can achieve a cure. If infected with genotype 2 or 3 then more than 7 out of 10 people can achieve a cure. Cure means that the hepatitis C virus is unable to be detected in your blood through blood tests at least 6 months after completion of treatment. This is called a sustained virological response (SVR). You can also have a histological response which means that the structural damage to your liver has decreased. Cure rates are highest when treatment is started early, before the development of severe scarring of the liver. Pegylated Interferon Pegylated interferon is a long acting interferon, which can actively fight the hepatitis C virus for longer. It only needs to be injected once a week for either 24 or 48 weeks depending on the genotype of the hepatitis C virus you have and how quickly you respond to treatment. (Refer to page 6)

9 Common Side Effects During Treatment Medicines used to treat chronic hepatitis C can have side effects. Most of the time these side effects are not serious but can be occasionally. Throughout treatment your doctor or nurse will take regular blood test to monitor the effects of your treatment. Treatment with ribavirin is associated with serious risks to the unborn baby. It is essential that both fertile women and men practice effective contraception for the duration of the treatment, and for a six month period after you have finished treatment. Please discuss with your doctor or nurse the appropriate contraception for you. When being treated with interferon it is common to feel like you have the flu. Symptoms or side effects may include fever, headaches, sore muscles or joints and tiredness for a few hours after each interferon injection. Treatment with interferon may cause low mood and depression. If you have had depression in the past, your doctor may offer you antidepressants to prevent this problem recurring during treatment. You might be asked to fill in a survey called the HADS score at certain clinic visits to check your mood while on treatment. Skin reactions may occur around the injection site or a rash may develop from treatment. Your nurse or doctor may offer you skin creams or you may need to be sent to a skin specialist. Talk to your doctor, nurse or health professional for further information. These side effects are worst in the first two weeks and in general, slowly get better. Most people find that having their interferon injection in the evening, keeping well hydrated and taking one or two paracetamol tablets prior to the injection helps to decrease these side effects. Interferon can cause insomnia and you may feel anxious or agitated. Your doctor may offer a non-addictive sleeping tablet to use during treatment.

10 Testing During Treatment During therapy with interferon and ribavirin you will need to have monthly blood tests to monitor your liver function and blood cell count. This is very important as the treatment may affect your blood counts. Your doctor may need to adjust the dosage of your medication to keep you on treatment safely. Your hepatitis C viral load will be measured at specific times during your treatment and this allows your doctor to measure your response. This is important to be able to predict your outcome more accurately. The viral load is measured once before treatment and then, generally, at weeks 4, 12, 24, and also at week 48 if you are receiving 12 months treatment. The final PCR/viral load will be done six months after finishing treatment to establish if you are cured of hepatitis C. For those people whose hepatitis C does not return three or six months after they finish treatment, they are considered to be cured. The doctor will tailor treatment to suit the individual and may modify from what has been outlined. 17 Diet And Lifestyle If you drink alcohol there is a higher risk of developing more serious liver disease, including cirrhosis, if you have chronic hepatitis C. It is recommended that you avoid alcohol while on treatment to improve the chance of cure. A normal healthy diet is recommended for most people with chronic hepatitis C. Having smaller more frequent meals may be helpful. A loss of appetite and weight loss are common during treatment. Occasionally your doctor may start you on food supplements to help you retain or rebuild your reserves. If you have nausea this may need treatment.

11 How to avoid spreading Hepatitis C People often worry about giving hepatitis C to friends and loved ones. As mentioned earlier, the virus is not easily spread, and can only be passed on through blood to blood contact. You can not get hepatitis C by hugging or kissing, sharing dishes or eating utensils, or bathrooms and laundries. There is no reason why you cannot go to work or school. How you can minimise the risk: Do not share needles (e.g. injecting drug use, tattooing, body piercing) Do not share any personal care items that might have your blood on them such as razors or toothbrushes Carefully dispose of items that may contain your blood such as tissues or plasters Use disinfectants and band aids to cover any cuts, wounds or open sores Avoid sexual practices that may cause contact with blood Do not donate blood Advise people that may come into contact with your blood such as your partner, doctor, nurse or dentist that you areinfected with HCV so they can take appropriate precautions

12 It is important to consider vaccination for other viral infections. This is particularly important for hepatitis A virus (food borne) or hepatitis B virus (blood borne). You need to ask your doctor to give you specific advice regarding this. For further information please see your doctor or nurse.

13 This booklet has been published as an educational service by Roche Products (New Zealand) Limited. Roche Products (New Zealand) Limited PO Box , Penrose, Auckland Freephone , Fax SAP /TAPSNA4314/2010AUG

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