What you need to know about hepatitis C when you have HIV

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1 What you need to know about hepatitis C when you have HIV Where patients matter

2 Table of Contents Introduction What is Hep C? Why is my liver so important to my health? Why is maintaining a healthy liver so important in successfully treating my HIV? How do people get Hep C? How do I know if I have Hep C? How do I get tested? What other tests might my doctor order if I am diagnosed with Hep C? How do I help prevent others from becoming infected with Hep C? What happens if I have both HIV and Hep C? How does Hep C affect HIV?

3 How does HIV affect Hep C? Why is it important that I talk to my doctor about Hep C treatment? What can happen if Hep C is not treated? What are the treatment goals of Hep C medication? How are the treatment goals of Hep C medication different from HIV medication? What should I ask my doctor about Hep C medication? Pegassist SM Hep C support whenever you need it Other sources of information Glossary Important Safety Information Where patients matter 3

4 Introduction About 900,000 Americans have HIV 1 out of 3 also has hepatitis C (Hep C). If you are reading this, you may be one of them. Having Hep C can have serious consequences to your health, especially if you have HIV. Therefore, it is important for you to read this booklet and talk with your doctor about medications that can be used to treat Hep C. This booklet will answer many of your questions about Hep C. It explains the disease and why it is important to treat it. You may be upset to learn you have two viral diseases. However, two prescription medications are approved by the FDA to treat Hep C in patients who have clinically stable HIV: PEGASYS (Peginterferon alfa-2a) with or without COPEGUS (Ribavirin, USP). Please see Important Safety Information at the end of this booklet and enclosed patient medication guides for PEGASYS and COPEGUS. What is Hep C? Hep C is a virus that infects and damages the liver. The first stage of the disease is called acute Hep C. During this stage, the liver becomes larger. Most people end up with chronic Hep C. With chronic Hep C, the virus continues to grow over the years. Some people with chronic Hep C may have major problems after only 5 years. Untreated Hep C is the leading cause of chronic liver disease. Chronic Hep C may lead to the need for a liver transplant, and even death. It has also been known to lead to liver cancer. The Hep C virus tends to get worse faster in people who also have HIV. Another problem people with HIV face is that their livers have to process HIV medication, which may weaken their livers even more. Why is my liver so important to my health? Your liver is an important part of your digestive system. In fact, almost everything that enters your body goes through your liver at some point. Your liver is responsible for so many things, that any damage to it can cause problems in other parts of your body. That s why a disease like Hep C, which affects the liver, is very serious. Here s what your liver does: Filters toxins and waste products from your blood Manages cholesterol and other chemicals in your body Makes protein, bile and the agents that clot your blood Helps your body process HIV medicines Stores vitamins, minerals, iron and sugars Keeps your hormones at the right level You need your liver to stay alive just as much as you need your heart to keep pumping blood to stay alive. Please see the glossary at the end of this booklet for definitions of key words. 4 Where patients matter 5

5 Why is maintaining a healthy liver so important in successfully treating my HIV? No doctor can tell you just how fast Hep C will damage your liver. But getting treatment earlier, rather than later, may help your liver by stopping the virus from further damaging it. If Hep C causes enough damage to the liver, it may not be possible to start or stay on HIV medication. This is why you may need to treat Hep C before there is major liver damage. As Hep C gets worse, it causes liver damage or scarring of the liver, which is called cirrhosis. This can lead to other serious diseases, like liver cancer and liver failure. But, there is hope because Hep C treatments are available that may help stop the damage to your liver, which may make it easier to take HIV medications. How do people get Hep C? You can get Hep C and HIV in some of the same ways, so people with HIV have a higher chance of having Hep C. That is why all people with HIV should get tested for Hep C. Hep C is spread from one person s blood to another. Here are some common ways people may become infected: Blood transfusions (before 1992) Intravenous drug use (past or present even onetime use) Tattooing and body piercing (nonsterile needles) Occupational (like needlestick and dental treatment) Medical equipment (such as dialysis, needles) Transmission from mother to child during birth (very rare, only about 5 out of every 100 babies are infected from their mothers with Hep C) Shared personal hygiene items (such as razors, toothbrushes, nail files) Snorting drugs through the nose (sharing bloody straws) Risky sexual behavior Acupuncture (nonsterile needles) Some people with Hep C don't know how they got the virus. It is possible to get Hep C from infected body fluids other than blood, but it is less likely. How do I know if I have Hep C? Very often Hep C has no symptoms. If you have HIV or other risk factors (mentioned above), you may need a test to see if you have Hep C. The symptoms of Hep C may include: Flu-like illness Diarrhea Joint pain General weakness or feeling tired Loss of appetite Blood-sugar problems Poor digestion Depression Mood swings Mental tiredness Poor sleep or problems sleeping Not feeling rested after sleep 6 Please see the glossary at the end of this booklet for definitions of key words. Where patients matter 7

6 How do I get tested? Because you already have HIV, your doctor may decide to give you a blood test to see if you have ever been exposed to the Hep C virus. The Hep C antibody test is a blood test that looks for the Hep C antibodies in your blood. TEST HOW IT S DONE WHY IT S IMPORTANT Hep C antibody A blood test To see if you have come in contact with the Hep C virus by looking for the antibodies your body has made to fight Hep C Because of your HIV, this test may not be reliable. Your doctor may choose another test to see if you have Hep C. The Hep C antibody test cannot tell if the virus is active in your body or how much virus you have. For that you need another test, which is called the Hep C viral load test. This test is used to see how much of the Hep C virus is in your blood. The Hep C viral load test is similar to how your doctor monitors your HIV viral load with a regular blood test. What other tests might my doctor order if I am diagnosed with Hep C? Hep C has many different types of strains (or genotypes). In the US, the most common genotype is 1. If your liver is healthy enough to begin medication, your doctor will also want to know the strain of your Hep C. TEST HOW IT S DONE WHY IT S IMPORTANT Genotype A blood test Lets you know what strain of Hep C you have To find out how damaged your liver is, your doctor may want to do a liver biopsy, too. TEST HOW IT S DONE WHY IT S IMPORTANT Liver biopsy A tiny sample of the liver is taken with a needle and examined in a laboratory Lets you know how much liver damage you have. People with very serious liver damage cannot take Hep C medication. Patients with little or no damage may be able to prevent damage from occurring TEST HOW IT S DONE WHY IT S IMPORTANT Hep C viral load A blood test Lets you know if Hep C is active and how much active virus there is in your body Please see the glossary at the end of this booklet for definitions of key words. 8 Where patients matter 9

7 How do I help prevent others from becoming infected with Hep C? Earlier, we discussed how Hep C is passed from one person to another. Here are some steps you can follow to help avoid spreading Hep C to others. Do not donate blood, organs, bone marrow, eggs or sperm if you have or suspect that you have Hep C Advise anyone (such as sexual partners, doctors or dentists) who could come in contact with your blood or body fluids if you suspect or know that you have Hep C Use disinfectants and bandages to cover cuts and wounds Do not share needles with anyone Avoid sexual practices that may cause contact with blood Carefully dispose of items that may contain your blood or body fluids (like tissues, swabs, tampons) Don t share any personal hygiene items (like razors, nail files, toothbrushes) What happens if I have both HIV and Hep C? You may be shocked, scared and upset when you find out you have another harmful virus. But you are not alone: one third of all people with HIV have Hep C. And just like you, they may be able to do something about it. If your HIV is stable, you can talk to your doctor about moving ahead and treating your Hep C. The doctor who treats your HIV may treat you for Hep C, too. However, you may be referred to another doctor for Hep C treatment. The medicines that control HIV cannot be used to treat the Hep C virus. You will need to take different medication to do that. So if your HIV is under control, now may be the right time to start thinking about treatment. Hep C medication works better when the liver has less damage. Although your HIV medication will be ongoing, your Hep C medication is taken for less than a year. It is possible for many people to take medication for both infections at the same time. If you are taking HIV drugs, you will want to talk to your doctor to make sure they are safe to take with your Hep C medications. How does Hep C affect HIV? Hep C does not seem to make HIV worse. But the liver damage from Hep C may make it harder for your liver to process HIV drugs. How does HIV affect Hep C? HIV can make Hep C worse. People with HIV tend to have Hep C that gets worse, faster. Some medications that fight HIV can cause more damage to your liver. This is because anti-hiv medicines must pass through the liver. In people with both viruses, anti-hiv drugs may add to the damage caused by Hep C. Without Hep C medication, people with HIV may progress to end-stage liver disease, which means they may need a liver transplant. They also could get liver cancer or may even die from untreated Hep C. Why is it important that I talk to my doctor about Hep C treatment? The longer Hep C goes untreated, the greater the risk for liver damage. Hep C medication works better if used before there is serious liver damage. What can happen if Hep C is not treated? If this damage continues, scar tissue starts to replace normal liver cells. Once a liver has scar tissue, it cannot heal itself completely. The more scar tissue there is, the harder it is for the liver to do its many jobs. For you, this may include processing your HIV medications. 10 Please see the glossary at the end of this booklet for definitions of key words. Where patients matter 11

8 What are the treatment goals of Hep C medication? The treatment goals of Hep C medication are: To achieve a sustained virologic response (SVR). This means that the medication was successful because the virus is undetectable in your blood at the end of treatment, and again 6 months later Stop more liver damage from happening Prevent other problems from Hep C (such as chronic liver disease or liver cancer) How are the treatment goals of Hep C medication different from HIV medication? The main goal of treatment for both HIV and Hep C is to reach undetectable levels of virus. While you will take your HIV medications for life, treatment for Hep C is only for a short period of time. If Hep C treatment is successful, you achieve a sustained virologic response (SVR). SVR means that you have no detectable levels of Hep C virus in your blood at the end of treatment, and again 6 months later. Another important goal is to stop more liver damage from happening. The best way to try to do this is to take all medicines just the way your doctor tells you to. What should I ask my doctor about Hep C medication? Hep C medication is available for people with HIV. If you have chronic Hep C, ask your doctor about treatment. Find out if there is any medical reason why you cannot try Hep C medication. Also, let your doctor know if you have any worries about taking medication for Hep C. Hep C treatment can help you, but it can also have side effects. If your Hep C treatment works, you will be better able to fight HIV and you may prevent major liver damage that could shorten your life. This is because your liver will be healthier, and better able to process your HIV medication. It is also important to know about the possible side effects that may happen with Hep C medications, so talk to your doctor today. Pegassist SM Hep C support whenever you need it If you decide to begin Hep C treatment, you are joining thousands of other people with HIV who are taking steps to help stop the Hep C virus from damaging their livers. The first and only FDAapproved treatment available to fight the Hep C virus in people with both clinically stable HIV and Hep C is PEGASYS and COPEGUS. If you decide to take PEGASYS and COPEGUS, you will want to look to your doctor or nurse and family and friends for support. Pegassist is also here to help you get through your treatment. Our patient support program is here to give you answers, help and support when you need it most. You can speak to a registered nurse around the clock for answers to questions about Hep C and your treatment (available in 150 languages) If you have access to a computer, you can get information about Hep C and your medications anytime To find out more about these services, call PEGASYS ( ) or just log on to or So why wait? Talk to your doctor today to see if Hep C treatment is right for you. This booklet is designed to provide general information to patients. You should always seek the advice of your doctor if you have any condition that may require medical treatment. 12 Please see the glossary at the end of this booklet for definitions of key words. Where patients matter 13

9 Other sources of information HIV and Hepatitis.com P.O. Box San Francisco, CA National AIDS Treatment Advocacy Project (NATAP) 580 Broadway, Suite 1010 New York, NY (888) 26-NATAP ( ) (212) National Hepatitis C Coalition, Inc. P.O. Box 5058 Hemet, CA National HepLine: (951) American Liver Foundation 75 Maiden Lane, Suite 603 New York, NY (800) GO-LIVER ( ) (888) 4-HEP-ABC ( ) Centers for Disease Control and Prevention (CDC) 1600 Clifton Road Atlanta, GA (888) 4-HEP-CDC ( ) Hepatitis Foundation International 504 Blick Drive Silver Spring, MD (800) (301) Visionary Health Concepts (fax) (800) Glossary Acute Hep C: The first stage of the disease after infection. During this stage, a person may or may not have symptoms, and the disease may or may not go away on its own Antibody: A protein released by the body to fight against an intruder (like a virus) Chronic Hep C: Constant inflammation of the liver, which may lead to other liver problems FDA (Food and Drug Administration): Government agency responsible for assuring the safety and effectiveness of a range of products Genotype: Genetic makeup, or strain of a virus Infection: Contamination by a disease-producing agent (like a virus) Liver biopsy [BYE-op-see]: Taking a tiny sample of the liver with a needle to be studied Sustained virologic response (SVR): The virus is undetectable in the blood at the end of treatment, and again 6 months later Viral Load: How much virus is in your body Virus: A tiny infectious agent that causes disease 14 Where patients matter 15

10 Important Safety Information What is PEGASYS? PEGASYS is a medication used to treat some adults who have hepatitis C and signs of liver damage. PEGASYS works to reduce the amount of virus in your blood, helping your body fight the virus. PEGASYS (Peginterferon alfa-2a), like other alpha interferons, can cause fatal or make lifethreatening problems worse (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In most patients, these conditions get better after you stop taking PEGASYS (see medication guide for more information and warnings). What is COPEGUS? COPEGUS is a medication that works by slowing down the growth of the virus. COPEGUS should be taken with PEGASYS to fight the virus. Do not take COPEGUS by itself. COPEGUS (Ribavirin, USP) can be extremely harmful and cause birth defects in an unborn baby. Female patients and the female partners of male patients should avoid getting pregnant. Ribavirin is known to cause anemia (low red blood cells), which can make heart disease worse. Also, ribavirin can harm your DNA and possibly cause cancer (see medication guide for more information and warnings). Who should not take PEGASYS and COPEGUS? Do not take PEGASYS alone or with COPEGUS if: You are pregnant or your partner is pregnant You or your partner plans to get pregnant during therapy or within 6 months after treatment ends You are breastfeeding You have hepatitis caused by your immune system (autoimmune hepatitis) You have unstable liver disease before or during treatment You are allergic to alpha interferons or any of the ingredients in PEGASYS and COPEGUS You have HIV with unstable or advanced liver disease You have abnormal red blood cells (caused by conditions like sickle-cell anemia or thalassemia major) Please turn the page for additional safety information. 16 Where patients matter 17

11 Important Safety Information (continued) What if I am pregnant or thinking about having a baby? If you are a woman who could get pregnant, you must take pregnancy tests before, during and for 6 months after treatment ends to make sure you are not pregnant. During treatment and for 6 months after treatment, female and male patients must: Use two forms of birth control (one being a condom with spermicide) Tell your doctor right away if you or your partner becomes pregnant. You or your doctor should also call the Ribavirin Pregnancy Registry at What medications should I avoid when I am taking PEGASYS and COPEGUS? You should not take didanosine with COPEGUS. Talk to your doctor about all medications that you are taking. 18

12 What are the possible side effects? The most common side effects of PEGASYS and COPEGUS are: Flu-like symptoms (including fever, chills, muscle aches, joint pain, headaches) Tiredness Upset stomach (like nausea, taste changes, diarrhea) Blood sugar problems (may lead to diabetes) Skin problems (like rash, dry or itchy skin and redness and swelling at injection site) Hair loss (temporary) Trouble sleeping The most serious side effects of PEGASYS and COPEGUS are: Risks to pregnancies Mental health problems (such as irritability, depression, anxiety, aggressiveness, trouble with drug addiction or overdose, feeling suicidal, including thoughts about suicide and suicide attempts) Blood problems (like a drop in blood cells leading to increased risk for infections, bleeding and/or heart or circulatory problems) Infections (which sometimes cause death) Lung problems (like trouble breathing, pneumonia) Eye problems (like blurred vision, loss of vision) Autoimmune problems (such as psoriasis, thyroid problems) Heart problems (including chest pain and, rarely, a heart attack) Liver problems (rarely, liver function worsens) Tell your doctor immediately if you think you or your partner may be pregnant or if any of these symptoms occur. Where patients matter 19

13 Where patients matter Brought to you by the maker of 2005 by Hoffmann-La Roche Inc. All rights reserved. Plandex

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