Women. and Hepatitis C. Infoline: Design direction

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1 Women and Hepatitis C Infoline: Design direction

2 Hepatitis Australia 2012 Funded by the Commonwealth Department of Health and Ageing. April 2012: Women and hepatitis C If you would like more copies of this booklet, or need more information about hepatitis C, contact your state or territory hepatitis organisation. Acknowledgments Hepatitis Australia thanks the members of the Health Reference Group, Community Reference Group, Hep C Australasia online forum members and the Project Reference Group for their contributions to the development of this booklet.

3 Contents Introduction What is hepatitis? About hepatitis A, B, C and E What about hepatitis D? Hepatitis C: a quick summary Symptoms What are the symptoms of hepatitis C? Testing What are the tests for hepatitis C? Antibody test Polymerase chain reaction test IL28B gene test Liver function test Liver biopsy Fibroscan More information on testing Avoiding transmission to others Drug use Tattoos, body piercing and skin penetration. 25 Blood transfusions and blood products Household transmission Sex Menstruation Treatments quick facts about hepatitis C treatment.. 29 What is the treatment? Pegylated interferon Ribavirin Research into new treatments What are the side-effects of treatment? More information on side-effects Am I eligible for government-subsidised treatment? What are the benefits of treatment? Complementary and alternative therapies.. 38

4 Looking after yourself Relieving stress Exercise Healthy eating Sleep Balancing rest and activity Decreasing substance use Laughter and recreation Reliable information Support Counselling Sex and reproductive health Menstruation Contraception Menopause Children Pregnancy and mother-to-child transmission of hepatitis C (vertical transmission) Breastfeeding Children with hepatitis C Disclosure and discrimination What should I consider before I tell. someone? Who do I have to tell I have hepatitis C? More information Glossary Further reading References Contacts State and territory hepatitis organisations...63 Other national contacts

5 Introduction T his booklet aims to help women who have recently been diagnosed with hepatitis C to make wellinformed decisions. When diagnosed with any chronic health condition it is important to explore what it means for you and the other important people in your life. Learning more about hepatitis C will help you to feel more in control and, most importantly, help you to make decisions that are right for you. This booklet may also be useful for your partner, family and friends. It also contains information that may help you when you are discussing your health with your general practitioner (GP) and specialist team. Please note that the information and comments in this booklet are not intended to replace professional medical advice. For expert advice on hepatitis C 3

6 treatment, speak to your GP, hepatologist (liver specialist) or hepatology (liver) nurse. This booklet may help to answer some of the questions you have about hepatitis C. Take time to read it and don t be afraid to ask for help. To obtain more information about hepatitis C, see the Contacts section at the end of the booklet. 4

7 What is hepatitis? H epatitis is a term that means inflammation of the liver. It may be caused by viruses, alcohol, drugs and other toxins, or, less commonly, by a breakdown in a person s immune system. Inflammation is a natural reaction of the body to injury and often causes swelling and tenderness. There are a number of viruses that cause hepatitis. Five of these have been labelled hepatitis A,. hepatitis B, hepatitis C, hepatitis D and hepatitis E. The main difference between the hepatitis viruses is how they are transmitted and the effect they have on a person s health. Many people will not experience any symptoms of acute infection; for those that do experience symptoms, most will only have a mild short term illness, however, symptoms can be severe for some. Chronic infection only occurs in hepatitis B and hepatitis C. 5

8 The following table explains the differences between hepatitis A, B, C and E. The rest of this booklet focuses on hepatitis C. About hepatitis A, B, C and E Hepatitis A Hepatitis B Hepatitis C Hepatitis E What are the more common means of transmission? Faecal-oral transmission. (Consumption of food or water contaminated with faeces containing the virus, or from person to person). Motherto-baby transmission. Sexual transmission Blood-toblood transmission Bloodto-blood transmission. Mother-tobaby transmission Faecal-oral transmission. (Consumption of water sources contaminated with faeces containing the virus) What are the symptoms of acute infection (that is, the initial phase of the infection)? Not everyone has symptoms. They are more common in adults than children. Symptoms of acute infection may include nausea & vomiting, loss of appetite, fever, aches and pains, dark urine and clay-coloured bowel movements. Jaundice may also occur (yellowing of the skin and whites of the eyes). Not everyone has symptoms. They are more common in adults than in children and are rare in infants. Symptoms of acute infection may include aches and pains, fever, nausea & vomiting, loss of appetite, abdominal discomfort, dark urine and clay-coloured bowel movements. Jaundice may also occur. Most people do not experience symptoms at the time of infection. For those that do, symptoms of acute infection may include fatigue, fever, loss of appetite, nausea & vomiting and abdominal pain. Jaundice is not a common symptom of acute infection. Not everyone has symptoms. They are more common in younger adults and rare in children. Symptoms of acute infection may include loss of appetite, abdominal pain, nausea & vomiting, fever, dark urine and clay-coloured bowel movements. Jaundice may also occur. 6

9 Hepatitis A Hepatitis B Hepatitis C Hepatitis E What is the chance of developing chronic (long term) infection? Is treatment available for chronic infection? None chronic infection does not occur. Not applicable chronic infection does not occur. Progression to chronic infection depends largely on the age of initial infection: 90% of infants 30% of children 5% of adults will develop chronic infection. Yes It aims to suppress the multiplication of the virus and slow the progression of liver disease. Progression to chronic infection occurs in about three out of four people. Yes It aims to produce a sustained virological response that experts equate to a cure. Cure rates vary, mostly according to the genotype (strain) of the virus. None chronic infection does not occur. Not applicable chronic infection does not occur. Is a vaccine available? Yes Yes No No What about hepatitis D? Hepatitis D is unique in that it can only lead to liver disease if the hepatitis B virus is present; it is uncommon in Australia. Vaccination against hepatitis B protects you against hepatitis D. 7

10 A note on the use of the word cure The terms sustained virological response and cure in relation to hepatitis C treatment are now used interchangeably by many, if not most clinicians in Australia and worldwide. A sustained virological response (SVR) is the goal of hepatitis C treatment and refers to the suppression of the virus to undetectable levels for an extended period of time. It is measured by taking a blood sample 6 months after the end of treatment. If no virus can be detected in the blood sample, the person is said to have cleared the virus and reached SVR. Studies have shown that a reactivation of the hepatitis C virus once SVR has been reached is a very rare occurrence, therefore for the vast majority of people SVR equates to a cure. 8

11 Hepatitis C: T a quick summary he hepatitis C virus may cause liver inflammation and liver disease. It is transmitted by blood-to-blood contact. It was first identified in 1989, before then, it was often referred to as non A/non B hepatitis or post-transfusion hepatitis. Hepatitis C, which affects millions of people around the world, is a slow-acting virus, and for many people it will not result in serious disease or death. On average, about a quarter of people infected with hepatitis C will clear the virus naturally within the first 12 months, but will always have antibodies to the virus. People who do not clear the virus will have chronic, or long-term, infection. Previous infection with hepatitis C does not protect against re-infection. At present there is no vaccine for hepatitis C. Maintaining a healthy weight, taking regular exercise and reducing alcohol consumption are 9

12 recommended to help reduce the impact that chronic hepatitis C has on the body. The current standard treatment for hepatitis C is a combination therapy of pegylated interferon and Ribavirin. Treatment can lead to a cure and treatment success depends largely on the genotype (or strain) of the virus. Left untreated, chronic hepatitis C can over time lead to progressive liver disease and in some cases cirrhosis and liver cancer. 10

13 Symptoms what are the symptoms of hepatitis C? D iagnosis of acute infection is often missed as only 5% of people experience any noticeable signs of illness. Occasionally, the initial, or acute, phase of infection can bring with it a flu-like illness, although some people develop nausea and vomiting, abdominal pain, and tiredness. Jaundice is not a common symptom of acute infection. Symptoms of chronic hepatitis C often do not appear for up to 10 years, however progressive liver damage can be silently occurring over this time. When symptoms of ongoing chronic infection do appear, they can range from mild to severe, and can occur continuously or in bouts. The most common symptoms are: mild to severe tiredness nausea and feeling ill after drinking alcohol or eating fatty foods 11

14 discomfort in the abdominal region increased moodiness or depression. Individual experiences of chronic hepatitis C can vary greatly. Remember that you might feel well even though the damage to your liver is progressing. If you have chronic hepatitis C and drink alcohol regularly, your chances of developing more serious liver damage, such as cirrhosis, are higher. 12

15 Chronic hepatitis C outcomes chart (natural history) This chart shows the different outcomes that may occur with chronic hepatitis C (hep C). It does not aim to show individual outcomes (prognosis). Personal factors such as alcohol intake, age when hep C was acquired and current level of liver damage may all influence a person s prognosis. Individuals are advised to seek medical advice regarding their own situation. On average, one of every four people who contract hep C will clear their infection natually within the first 12 months. Three of every four people will develop chronic (ongoing) hep C. Of 100 people with chronic hep C who remain untreated. 45% won t develop liver damage After 20 years 47% will develop mild to moderate liver damage 7% will develop cirrhosis of the liver 1% will develop liver failure or liver cancer 45% won t develop liver damage After 40 years 31% will develop mild to moderate liver damage 20% will develop cirrhosis of the liver 4% will develop liver failure or liver cancer This table is reproduced from the Hepatitis C Council of NSW, now known as Hepatitis NSW. Illness Outcomes Factsheet (2007) 13

16 Testing I f you are reading this booklet, you may have been tested or may be about to be tested for hepatitis C. Testing for hepatitis C in Australia should conform to the National Hepatitis C Testing Policy which states that testing is confidential, voluntary and conducted following informed consent and for the benefit of the individual. To provide informed consent, individuals need to have a good understanding of the testing procedures, the reasons for testing and the consequences flowing from the test result. What are the tests for hepatitis C? Tests that may be recommended for assessing your hepatitis C status include blood tests, scans and a biopsy. 14

17 Blood tests include: antibody test polymerase chain reaction tests (PCR) PCR viral detection test PCR viral load test PCR genotype test IL28B gene test liver function test. Other tests: abdominal ultrasound liver biopsy Fibroscan test. Antibody test The initial screening test is a blood test that checks for the presence of hepatitis C antibodies. The immune system produces antibodies in response to the virus. It may take up to 3 months for these antibodies to appear in your blood following infection, although the test is usually positive 6 weeks after infection. The period from infection to the appearance of antibodies is known as the window period, and during this time antibody testing might not produce an accurate result. Antibody testing should be repeated after 3 months. A negative test result indicates that no antibodies are detected and the person has not been exposed to the virus. 15

18 A positive test result means that antibodies were detected and the person has been exposed to the hepatitis C virus. A positive antibody test result doesn t confirm you have the virus. About a quarter of people who develop hepatitis C antibodies in response to infection clear the virus naturally within 12 months. A different test, the PCR test (explained over), is used to see whether you have the virus (as opposed to the antibodies) in your blood. People who have cleared the virus naturally within the first 12 months following infection and people who have had successful antiviral therapy will continue to have a positive antibody test (indicating prior exposure to the hepatitis C virus), but the PCR viral detection test will be negative (indicating the virus is not detected in the blood). Some hepatitis C antibody tests will be inconclusive, that is, it is not clear whether the result is positive or negative; these should be followed up with a PCR test. False negative hepatitis C antibody tests may occur in people who are immune-deficient (for example, people who have HIV infection) and in people who are immuno-suppressed (for example, people who have had organ transplants). The antibody test is not reliable for newborn babies. Babies born to mothers infected with hepatitis C can have a positive antibody test result without actually being infected. Because this maternal antibody usually lasts between 12 and 18 months, children should be tested after this time. To recap, a few important points to note about the hepatitis C antibody test: 16

19 All positive antibody results should be followed up with a PCR viral detection test. Following successful treatment for hepatitis C, the antibody test will remain positive, but the PCR viral detection test will be negative. Inconclusive hepatitis C antibody tests should be followed up with a PCR viral detection test. False negative hepatitis C antibody tests may occur in people who are immune-deficient or immunosuppressed. The antibody test is not reliable for babies and infants. Polymerase chain reaction test The polymerase chain reaction (PCR) test can detect whether the virus is present in your blood. It uses a laboratory technique to amplify the genetic material of the virus (hence the term chain reaction ). There are three types of PCR test: the viral detection test, the viral load test and the genotype test. The PCR viral detection test The basic PCR viral detection test is used to determine whether a person has the hepatitis C virus; it is also called the PCR qualitative test. This test is recommended for anyone who has had a positive or inconclusive hepatitis C antibody test. Unlike the antibody test, a PCR viral detection test can confirm if the virus is present during the window period the virus can be detected in the blood as early as 2 weeks after infection. The PCR test is also 17

20 useful to confirm hepatitis C status when a person is immunodeficient (because of HIV infection, for example), or has been immunosuppressed by drugs (as in organ transplantation), as these conditions are associated with false negative hepatitis C antibody test results. The PCR viral load test The PCR viral load test is used to estimate the amount of hepatitis C virus circulating in someone s blood; it is also referred to as the PCR quantitative test. This test is useful in determining the likelihood of response to treatment; those with a lower viral load generally respond better to treatment The PCR genotype test The genetic make-up of the hepatitis C virus is highly variable, and this has led scientists to divide the virus into different genetic strains, or genotypes. Response to treatment is largely determined by genotype. The PCR genotype test is used to determine the specific genotype each person has, which is important when making decisions about treatment. For example, with combination therapy of pegylated Interferon and Ribavirin, people with genotypes 2 and 3 have a higher chance of cure (up to 80%) than people with genotype 1 and 4 (up to 50% with current treatment). They also have a reduced treatment period 6 months for genotypes 2 and 3, compared with 12 months for genotype 1 and 4. 18

21 IL28B gene test The IL28B gene test is a blood test to detect the variation in genetic sequence. It offers a strong pre-treatment prediction of treatment response for people with genotype 1. The results can be CC genotype, CT genotype or TT genotype. Recent research suggests that people with genotype 1 infection that had CC genotype were 2 to 3 times more likely to have a successful treatment outcome than people with CT or TT genotypes. 1 This test may be useful for people who are thinking about treatment and would like more information on their chances of success. As with any genetic test, it is important to discuss with your doctor prior to having the test, any potential negative flow-on effects of obtaining an unfavourable test result, both clinical and non-clinical. Non-clinical flow-on effects include privacy concerns and potential use of the results by insurance companies. Call the National Hepatitis Infoline on for more information on this new test or discuss it with your specialist. Liver function test The liver function test is a blood test that provides an indication of whether the liver is functioning properly. The test measures the amount of enzymes in the blood; elevated levels of these enzymes can indicate inflammation of the liver. For people with hepatitis C, the enzyme alanine aminotransferase (ALT) is the most relevant enzyme measured by a liver function test. ALT is a liver enzyme that can leak out into the bloodstream when liver cells are inflamed. Elevated ALT levels suggest liver inflammation; 19

22 however, damage to your liver can occur even with normal ALT results. The liver function test provides a basic guide and should only be viewed as part of the overall picture of your health. If your ALT levels are consistently elevated, it is important to discuss with your GP the possibility of referral to a liver specialist. If your test results show a particular pattern, or don t seem to correspond with your symptoms, your GP might suggest different tests. Liver biopsy A liver biopsy is generally performed in a hospital day clinic under local anaesthetic. It involves removing a tiny sample of your liver by inserting a thin needle into your right side. A liver biopsy can reveal how much scar tissue has formed in your liver and whether or not you are developing fibrosis or cirrhosis. Scar tissue affects the flow of blood and other fluids through the liver. Without good blood flow and with fewer liver cells, the liver cannot function properly, and it becomes lumpy and hard. Healthy liver Cirrhotic liver 20

23 The test results may reveal varying stages of liver disease: mild the liver is inflamed but scarring is minimal moderate the liver is inflamed, and moderate levels of scarring are detected severe fibrosis in one area of the liver connects to scar tissue elsewhere, leading to advanced fibrosis cirrhosis in this advanced stage of liver damage, cirrhosis (advanced scarring) has occurred. You do not need a liver biopsy to be eligible for government-funded hepatitis C treatment. If you are considering treatment, your doctor might recommend it as it may be helpful in determining the urgency of treatment. You should discuss the advantages and disadvantages of having the biopsy with your doctor. This would also be a good time to discuss other alternatives such as Fibroscan. Fibroscan Fibroscan is an ultrasound-like device that assesses the degree of liver damage, such as fibrosis, by measuring liver stiffness. It is a non-invasive procedure that takes only a few minutes to perform. Because it is non-invasive, Fibroscan is less distressing for patients than liver biopsy. If performed yearly, the results can be used to track the progress of the disease and determine whether liver scarring is increasing. While a Fibroscan is extremely efficient at picking up mild or minimal liver disease and diagnosing 21

24 cirrhosis, a liver biopsy may give a better indication of disease progression for those with moderate levels of disease. More information on testing The booklet Hepatitis C: testing information gives an in-depth explanation of the tests available for hepatitis C. To obtain a copy of the booklet, see the Contacts section or call the National Hepatitis Infoline on Well, my GP is really good, and he tries to come in to the hospital for up-to-date information. I ve got kids to look after and I never really went out looking for support. If I had any questions I would ask my GP who would try and get some information in for me, or I would ask the acupuncturist and he would get me information. Some of my friends are midwives and they made me feel better if I had questions or could access some data to answer my questions. Mary, age 34 22

25 Avoiding transmission to others H epatitis C is a blood-borne virus and is transmitted when contaminated blood from one person gets into the bloodstream of someone else. This is also known as blood-to-blood transmission. The virus is highly infectious; even tiny amounts of blood, invisible to the naked eye can be a source of hepatitis C transmission. The hepatitis C virus can survive on surfaces such as tables and counters for at least 16 hours and up to 4 days. In contaminated syringes the virus may remain active for longer depending on both the type of syringe and temperature at which it is kept. Blood-to-blood transmission can occur in many different ways including: drug use tattoos, body piercing and skin penetration transfusion of infected blood and blood products household transmission sex menstruation. 23

26 Drug use It is estimated that about 80% of the Australians who have been exposed to the hepatitis C virus have contracted the virus through injecting drug use, and about 90% of new infections are related to injecting drug use. Contaminated equipment and surfaces used for injecting drugs such as syringes, needles, tourniquets, swabs, water, spoons and containers are all means of transmitting the virus if they are shared with someone else. Minute amounts of blood on your hands and around the puncture site can also be a transmission source if they come into contact with another person s bloodstream. If you are snorting drugs, remember that the lining of the nostril is an extremely sensitive area and can easily be damaged. If you are sharing banknotes or straws for snorting, you can potentially transmit the virus to the next person. 24

27 Tattoos, body piercing and skin penetration The use of uncontaminated tattooing and body piercing equipment and ink is essential to prevent transmission of the virus. Ensure your tattooist or body piercer is licensed, belongs to a professional body and follows standard infection-control guidelines. Backyard tattoos and piercings can easily result in transmission of hepatitis C to others; they should be avoided. Blood transfusions and blood products In Australia, before February 1990, some Australians became infected with the hepatitis C virus through blood transfusions or blood products. Since 1990, all blood is screened for hepatitis C. If you have, or have had hepatitis C, you are not eligible to donate blood in Australia. 25

28 Household transmission There is a possibility of hepatitis C transmission occurring by sharing your personal grooming items, such as toothbrushes, razors and nail clippers, even if invisible amounts of blood are present. It is best to keep these items separate from the rest of the household to prevent others from using them. Following the standard precautions for dealing with blood reduces the risk of transmission. Standard precautions involve treating all blood as potentially infectious regardless of who it comes from, and making sure there is a barrier between you and the blood. To reduce the risk of transmission to others you should: clean up your blood spills yourself. Have rubber gloves available if someone insists on cleaning up your blood carefully wipe up any blood spills with a paper towel, and wash the area with soapy water. If there is a possibility of bare skin contact by a household member, disinfect the area with household bleach after washing it 26

29 have a good first-aid kit available and completely cover any cuts or wounds with a waterproof dressing or Band-Aid place your blood-stained tissues, sanitary towels or other blood-stained dressings in a leakproof plastic bag before disposal. I was very careful if I was bleeding or using toothbrushes and all that sort of thing that you normally take for granted. Not that I give anyone my toothbrush, but razors and things like that, being extra careful. Mary, age 34 Sex It is unlikely that hepatitis C will be transmitted through sexual activity in the absence of blood. Hepatitis C is not classed as a sexually transmissible infection. Getting semen or vaginal secretions on unbroken, healthy skin does not normally cause a concern for hepatitis C infection; however there is a possibility of hepatitis C transmission in the presence of blood from menstruation or spotting (mid-cycle bleeding). The presence of skin grazes, sores, cuts, scratches or blisters in the genital, anal 27

30 or mouth region and/or the presence of sexually transmissible infections increase the risk of hepatitis C transmission through sexual contact. In these circumstances, practising safer sex is the best way to prevent transmission to others. Safer sex includes using condoms and water-based lubricants during penetrative vaginal or anal sex, using dental dams (squares of latex that can be used to cover the vulva and anus) during oral sex and latex gloves during penetration with the hands or fingers. For further advice on safer sex, contact your hepatitis organisation, sexual health clinic or family planning centre. Menstruation For women with hepatitis C, it is important to remember that menstrual blood contains the hepatitis C virus. Therefore, care needs to be taken when disposing of used tampons and pads. Most workplaces and public places have special hygienic disposal units for used sanitary items. If these are not available, keep a pack of small plastic bags that can be wrapped and sealed to prevent leakage, and then place in the general rubbish. 28

31 Treatments 12 quick facts about hepatitis C treatment 1 The current standard pharmaceutical treatment for hepatitis C is a 24- week, or 48-week course of weekly pegylated interferon injections and daily Ribavirin capsules. 2. Most adults with chronic hepatitis C infection, including people who currently inject drugs, are eligible for government-funded treatment. 3. The aim of treatment is to achieve a cure; however, there are some benefits to treatment even if this does not occur. Cure is defined as a sustained virological response (SVR), and is measured by a blood test taken 6 months after the completion of treatment. 4. The number of people who achieve a cure following hepatitis C treatment has improved significantly in the last 10 years, as has the management of side-effects. 29

32 5. Achieving a cure depends on many factors, but one of the most important is the genotype of infection. Genotypes 2 and 3 are easier to treat, and genotypes 1 and 4 are harder to treat. In Australia, most people with hepatitis C have either genotype 1 or The standard treatment for people with genotype 2 or 3 infection takes 24 weeks, and has, on average, an 80% chance of achieving a cure. 7. The standard treatment currently available for people with genotype 1 or 4 infection takes 48 weeks, and has on average, a 50% chance of achieving a cure. 8. Apart from genotype, many other factors affect a person s chance of achieving a cure. These include gender, age, weight, the stage of liver disease, the amount of virus in the blood, and co-infection with hepatitis B or HIV. 9. Treatment may not be suitable for people with advanced liver disease. 10. Treatment experiences vary greatly from person to person. 11. Some people have minor side-effects from treatment; for others, hepatitis C treatment can be more difficult because of significant sideeffects. It is not possible to accurately predict how you will react to treatment. 12. Even after successful treatment you will continue to have hepatitis C antibodies in your blood, indicating that you have been exposed to 30

33 the virus in the past. However, these hepatitis C antibodies do not protect you against being reinfected. What is the treatment? Pegylated interferon and Ribavirin are the current standard pharmaceutical treatment for hepatitis C; they work together to fight the infection and clear the hepatitis C virus from your body. When the two medications are given together it is called combination therapy. Pegylated interferon Interferon is a naturally occurring protein in the body that is produced when the body is fighting infection. Pegylated interferon is a man-made interferon that boosts the immune response which slows the growth of the hepatitis C virus. It is injected once a week into the fat of the abdomen, and must be kept refrigerated. 31

34 Ribavirin Ribavirin alters the body s immune response to viruses and slows down the speed at which the hepatitis C virus reproduces. Ribavirin works best when taken in combination with interferon, and is taken orally as a tablet or capsule twice a day. Research into new treatments Research is being carried out across the world to find more effective and better tolerated medicines to treat hepatitis C. The research news for people with the harder-to-treat genotype 1 infection is good. Combining the existing combination therapy of pegylated interferon and Ribavirin with protease inhibitors such as Boceprevir or Telaprevir have been shown in clinical trials to result in a higher cure rate. Currently these two drugs are not widely available through the Pharmaceutical Benefits Scheme in in Australia, but this situation may change in the near future. The treatment for hepatitis C is expected to go through a rapid change over the next 5 to 10 years as many new treatments are currently being trialled. What are the side-effects of treatment? The side-effects of the current standard treatment for hepatitis C are different for each person. Some people report no, or few, side-effects, while others may have significant side-effects. 32

35 Doctors often report that side-effects will resolve soon after completing treatment, but recent research has suggested that side-effects may linger for some people for 6 to 12 months, or even longer, after treatment has finished. A common side-effect shortly after having the pegylated interferon weekly injection is flu-like symptoms such as: fever chills muscle pain. Other common side-effects are: fatigue itchy dry skin temporary hair loss. Less common side-effects are: loss of appetite nausea or vomiting diarrhoea dry cough, sore throat sinus problems anaemia thyroid disorders and diabetes which can be triggered or aggravated mild or significant changes to mood or thinking processes: irritability loss of concentration forgetfulness mood swings 33

36 panic attacks and sleep problems depression feeling aggressive or highly agitated (psychosis) If signs of depression or psychosis occur, see your doctor immediately for help in managing these symptoms. If signs of depression or psychosis occur, see your doctor immediately for help in managing these symptoms. While this list of possible side-effects may seem daunting, it is important to remember that everyone s experience while on treatment is different. The management of the side-effects has improved substantially over the last few years. Knowing what to do and where to go for help if you do experience side-effects is an important part of your pre-treatment preparation. The hepatology nurse in the liver clinic, your counsellor and your local hepatitis organisation are good sources of support if you need it. More information on side-effects Some practical advice on managing treatmentrelated side-effects can be found in the booklet Hepatitis C: treat it, beat it. Some of these suggestions may ease the side-effects. If your symptoms persist, it is best to talk to a health professional for advice. The stories I heard about treatment that people get really sick they were enough to put me off having treatment. But my doctor was able to reassure me that not everyone gets sick on treatment. Sarah National Hepatitis C Needs Assessment

37 Am I eligible for governmentsubsidised treatment? The criteria for government-subsidised hepatitis C treatment follow the guidelines laid down by the Pharmaceutical Benefits Scheme s Highly Specialised Drugs program. To gain access to hepatitis C treatment under this program, you must hold a Medicare card or be an overseas visitor from a country with which Australia has a Reciprocal Health Care Agreement and meet the specific medical criteria. These medical criteria may change from time to time and should be confirmed with your treating doctor. Currently the personal eligibility criteria for adults include the following: you must have current chronic hepatitis C infection that is confirmed by positive hepatitis C virus antibody and RNA tests (e.g. PCR viral detection test) 35

38 you must be aged 18 years or over if you are female and of child-bearing age, you must not be pregnant or breastfeeding if you are the female partner of a male patient you must not be pregnant you and your partner must both be using effective contraception (one for each partner). The criteria for treatment have changed significantly in the last 10 years. It is important to remember that: You no longer need to have a liver biopsy to access government-funded treatment; this requirement was removed in People who currently inject drugs are eligible for government-funded hepatitis C treatment. Methadone use does not interfere with current treatment medication. You do not have to have liver scarring, or be noticeably sick to get treatment. Getting treatment before you develop liver damage can increase your likelihood of clearing the virus and achieving a cure. If you have decompensated liver disease (complications from cirrhosis), treatment may not be effective or safe and may change your treatment options. Talk to your liver specialist about the clinical management options that would be best for you. A past history of mild depression, anxiety or other mental health problems does not automatically exclude you from treatment. People with prior mental health issues should explore the risks 36

39 and benefits of treatment further with their treating doctor. From December 2008, government-funded retreatment was made available for some people who had previously had unsuccessful treatment; this is considered on a case-by-case basis. If you are considering re-treatment, it is important to discuss this with your specialist. GPs may not always be aware of the current criteria for accessing government-funded hepatitis C treatment. If you are confused by any information provided, you can contact your local hepatitis organisation for further clarification. What are the benefits of treatment? A cure is the best benefit you can achieve from treatment. A cure is defined as a sustained virological response and is measured by a blood test taken 6 months after the end of treatment to check whether any virus remains in your body. The main factor that affects your individual chance of achieving a cure is the genotype of the virus. The genotype is determined by a blood test. Genotype 2 or 3 infection requires 24 weeks of treatment, and on average there is an 80% chance of achieving a cure. Genotype 1 or 4 infection requires 48 weeks of treatment, and on average there is a 50% chance of achieving a cure. 37

40 Many other factors also affect cure rates. Treatment success rates are generally greater in those people who: are younger have a lower viral load and have minimal liver fibrosis are female and not post-menopausal are in a healthy weight range adhere to the treatment regime are not co-infected with hepatitis B or HIV. Complementary and alternative therapies Complementary and alternative therapies are often used by people seeking to improve the quality of their life by relieving symptoms of chronic infection. There has been limited research into the effectiveness of these therapies for people with hepatitis C. Some studies have suggested that herbs such as milk thistle, CH100 (a Chinese herbal product) and dandelion may help manage the symptoms of hepatitis C before starting treatment. However, it is unclear if some of these liver-friendly herbs interfere with the effectiveness of combination therapy. For this reason, many people use these herbs while preparing for treatment, but not during treatment. You should always discuss your use of herbs with your GP and specialist; this will help them protect your health. 38

41 There are also many herbs that are considered dangerous for people with hepatitis C. For more information on herbs and therapies that can be dangerous to the liver, see Hepatitis C: a guide to healthy living. The side-effects from interferon were very hard to take and I was depressed. I knew I couldn t take antidepressants so I went to see a natural therapist who suggested I try St John s Wort to help the depression. I really think it s made a difference and my specialist knows I m taking it. Jenny, age 46 39

42 Looking after yourself T he how you relieve stress whether you exercise what you eat how much you sleep choices you make are important for looking after yourself and your health, for example: how you balance rest and activity how you manage substance use how much laughter and recreation you get what support you need whether you would benefit from counselling. Making healthy choices and then putting these decisions into practice can also give you a feeling of wellbeing and empowerment. 40

43 Relieving stress There are a number of ways to relieve stress if you have hepatitis C, whether or not you are receiving treatment: exercise eat nutritious foods sleep for 8 hours a night balance rest and activity decrease your substance use laugh and play obtain reliable information get support from your family, friends and others. Exercise Exercise can help to counteract feelings of fatigue and depression and feeling low. Start slowly and build up slowly. Don t overdo it. Exercise will help keep your immune system and liver working well, thus decreasing the risk and possible development of fatty liver, diabetes, depression, stress and anxiety. 41

44 Start your exercise gently, and slowly build up to exercising daily for at least 30 minutes. Do more if you can, but don t do so much that you begin to feel tired and run down. Check with your doctor or health care worker if you are not sure what type of exercise you should do. A daily walk, tai chi, yoga, or some light gardening may help to relieve stress. On days when you are feeling more energetic, perhaps then you will feel more like riding a bike, dancing or playing in a team sport. All these are good options to help lift your mood. Exercise can also help by distracting you from your daily worries, lifting your mood, helping you get a good night s sleep and giving you more social contact. The aim is to find a balance of activities that revitalise you during the day and promote sound sleep at night. Healthy eating What you eat affects your quality of life. A healthy diet can help to: boost your immune system relieve some of the symptoms give your body the nutrients necessary to maintain liver health. 42

45 For most people, hepatitis C does not cause nutrient imbalances. Liver dysfunction and liver disease such as cirrhosis can, however, result in malnutrition. Talk to your liver specialist if you have cirrhosis. Sleep The body needs 7 to 9 hours sleep a night. Inadequate, or poor quality sleep can lead to daytime tiredness. Talk to your doctor if sleeplessness contributes to your fatigue. I am not so hard on myself so I ve been able to cope with my tiredness better. I used to work two jobs and used to keep pushing myself because I kept thinking, I m not doing enough. I can do more. Everybody else can do it, why can t I?. I would push myself so hard that I would get ill and shorttempered. I would become so tired that I d have to sleep two days in a row. I couldn t get up, you know, but now I can control that better. Rachael, age 44 43

46 Balancing rest and activity Schedule a daily rest period. Consider resting as a preventive measure, and try to plan things so you can rest before you become too tired. Pace yourself, take breaks, plan ahead and delegate responsibilities. I think the most positive thing is that I m more aware of my own body and the benefits of staying at home and mellowing out a bit. I was never much of a drinker, I don t smoke, but I did become a lot more aware of the consequences of anything I took, alcohol for instance. Before [hepatitis C] if I had something to do, like a barbecue or going out at night, no matter how I felt I would just go, but now I m a lot more conscious of listening to myself and my body and, if I m feeling a bit ill or lacking energy, then I ll stay home, whereas before I would push myself and be ill for a couple of days. You just can t afford to be like that. Mary, aged 34 44

47 Decreasing substance use Substances such as alcohol, drugs, tobacco and excessive caffeine can all cause or aggravate depression or anxiety. Alcohol is a depressant and can cause even greater liver damage in people with hepatitis C. Tobacco and caffeine are stimulants and can produce an increase in anxiety levels. Your doctor or health care worker can assist with strategies to decrease substance use. Laughter and recreation You don t need a doctor s prescription for laughter and play. Prescribe it for yourself. Find fun things to participate in as they will improve your mood and help you get rid of negative thoughts. Reliable information The internet can be a useful tool for finding the latest information, but you need to check that the information you use is from a reliable source. If you are unsure of this, you could call your local hepatitis organisation to check on the sources see the Contacts section for a list. Support The support of family, friends, community and support groups can be invaluable. You can share resources, experiences and tips on managing your illness. Contact your local hepatitis organisation for details on where you can find support. 45

48 I think women talk more than men and need that emotional outlet. I didn t have anyone to talk to up there [regional area]. I did try to talk to some people, but they really didn t have much of an idea what I was going on about, so it made it a bit hard. But it was still, I suppose, a relief to be able to talk to them, but it wasn t like talking to somebody who knew It was hard as there is a lot of stigma attached to the disease, so you have to be careful who you tell Counselling Rachael, age 44 Many people find counselling very helpful in coping with the disease in the longer term. Benefits are increased energy, feeling happier and more fulfilled, and feeling more in control. Counselling can help you to: overcome your personal traumas or dilemmas create ways to think more clearly make better decisions feel better about yourself define your desired outcomes and achieve them manage stress and meet challenges gain a clearer understanding of how your choices affect your life. Health is a complete state of physical, mental and social well-being and not merely the absence of disease or infirmity. World Health Organization,

49 Sex and reproductive health M enstruation Your menstrual cycle does not change because you have hepatitis C although some women find they miss a period or have shorter periods. A change in your menstrual cycle may not be related to having hepatitis C, and therefore any change should be discussed with your doctor. As menstrual fluid contains blood and other body fluids, and hepatitis C is transmitted by blood-toblood contact, there is a possibility of transmitting hepatitis C through sexual contact during menstruation. Having sex while menstruating can increase the risk of transmitting hepatitis C if your sexual partner has any open cuts, wounds or abrasions. Using dental dams for oral sex and condoms for penetrative sex will reduce the risk of blood-to-blood contact. 47

50 Being blood aware will lower the risk of transmitting hepatitis C through menstruation. This includes disposing of used tampons and sanitary pads in hygienic disposal units or in leakproof plastic bags in the general rubbish. Contraception There are many contraceptive options for women. They include: contraceptive implants intrauterine devices (IUD) intrauterine systems (IUS) contraceptive injections contraceptive rings contraceptive pills condoms (male and female). More information on how to choose the right contraceptive solution for you is best done in consultation with your doctor. The oral contraceptive pill is fine for the vast majority of women with hepatitis C. However, if you have severe liver disease, you may not be able to tolerate the oestrogen hormones that are in the oral contraceptive pill. It is important that you discuss all your options with a medical practitioner to find what is best for your situation. 48

51 Menopause Hormone replacement therapy (HRT) may not be well tolerated because the liver has difficulty in breaking down the hormones. Many hormonal changes that you experience as part of menopause are common to most women who are menopausal and are not necessarily associated with the hepatitis C virus seek the advice of a doctor or an endocrinologist (a hormone specialist) for any problems you experience with menopause and HRT. 49

52 Children P regnancy and mother-to-child transmission of hepatitis C (vertical transmission) Hepatitis C does not reduce the likelihood of you becoming pregnant. Women with hepatitis C on treatment (pegylated interferon and Ribavirin) must use two forms of contraception (one for each partner) to ensure they do not become pregnant during their treatment, and for 6 months following the end of treatment. This is because pegylated interferon, and especially Ribavirin, can cause birth defects. Hepatitis C is more likely to be transmitted during birth than while the baby is inside the mother. 50

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