It is now possible to cure about 80% (8 out of 10 people) who take the current HCV medications. Treatment, however, is not easy! The most important person who will help you achieve a cure is YOU. The best tool we have to make it a reality is adherence. This brochure will discuss the reasons why treatment adherence is so important. You will learn that the key to being adherent to taking the HCV medications is persistence and planning ahead for any unforeseen problems. Adherence to HCV medications means taking all of the medications prescribed by a medical provider. But it is really more than that. It’s about taking the medications at certain times, eating the right types of food when taking the medications, keeping all of your medical appointments and getting lab tests. Adherence to HCV medications will increase the chances of being cured of hepatitis C and decrease some of the side effects. Adherence will also help to prevent something called drug resistance. INTRODUCTION important! • Ribavirin and HCV protease inhibitors have to be taken with food. Ribavirin (food), telaprevir (not low fat food) and boceprevir (light meal or snack). • Drink plenty of clear fluids—this will help to keep your body well-hydrated and it will help to reduce some of the side effects of treatment. • HCV protease inhibitors should never be taken alone—always take them with pegylated interferon and ribavirin. • Take the interferon shot before bedtime and prior to a day off. • The dose of the HCV protease inhibitors should never be lowered. • If you miss a dose of medicine ask your doctor or nurse when you should take the next dose. • Tell your doctor or nurse about any side effects and get them treated before they become worse. ADHERENCE self-help tips • Your doctor or nurse will give you instructions about how and when to take the HCV medications. If you do not understand any part of the instructions ask questions and have them write out the answers for you. • Talk with your medical provider about prescribed and over-the-counter medications. • Headaches can often be relieved by rest, massage, and application of heat or cold to the back of the neck. • Light fever can sometimes be reduced by sponging with lukewarm water. • Get some exercise such as walking, swimming, Qi Gong, etc. • Seek help from a medical provider for irritability, depression or anxiety. These are treatable conditions. • Moisturize daily with an over-the counter lotion with sunscreen. • Eat small frequent healthy meals. • Use relaxation techniques for stress. • If any side effects become worse— report them to your doctor or nurse. curing HCV ADHERENCE S E C R U O RES Visit the Hepatitis C Support Project / HCV Advocate website for more information about hepatitis C and HCV treatment. Partnership for Prescription Coverage 1-888-477-2669 www.pparx.org Author Alan Franciscus Executive Director, Hepatitis C Support Project Editor-in-Chief, HCSP Publications Alan Franciscus Webmaster and Managing Editor C.D. Mazoff, PhD Design and Production Leslie Hoex, Blue Kangaroo Design Genentech (Member of the Roche Group) www.genentechaccesssolutions.com/portal/site/AS/ 1-877-PEGASYS (1-877-734-2797) Kadmon Pharmaceuticals www.kadmon.com/docs/patients_assistance 1-800-405-8506 Merck (includes Schering-Plough subsidiary) 1-866-939-HEPC (4372) www.merck-cares.com NeedyMeds www.needymeds.org Vertex 1-888-552-2494 www.vrtx.com/patients.html This information is provided by the Hepatitis C Support Project, a non-profit organization providing HCV, HBV and HIV/HCV coinfection education, support and advocacy. Hepatitis C Support Project P.O. Box 427037 San Francisco, CA 94142-7037 websites Visit our websites to learn more about viral hepatitis: www.hcvadvocate.org • www.hbvadvocate.org www.hepatitistattoos.org curing HCV ADHERENCE Made possible by Merck & Co. Inc. curing HCV hepatitis c Hepatitis C is a virus that mainly affects the liver. The liver is the main M ost people think of HCV treatment as injecting a medication and taking pills. But treatment is much more than that—it’s about eating well, getting support, keeping appointments, getting organ that the hepatitis C virus uses to replicate or make more copies regular lab work, exercise, rest and stress of itself. During this process of replication the hepatitis C virus makes parts of treatment is the connection mistakes in its genetic code—this means that the new copies of the reduction. And one of the most important between the mind and body—that is, if you believe that treatment will work, you hepatitis C virus are slightly different than the original hepatitis C viruses will be more inclined to take all of the that are in your body. This process is called mutation. To combat hepatitis appointments, and therefore treatment will C the immune system develops antibodies to fight off and kill HCV. But since the virus has slightly altered itself it can evade the immune system. The way that HCV constantly mutates is why HCV can survive in the body so long and one of the reasons why so many people who are initially infected with HCV develop chronic or long-term infection. medications and keep all your medical be more likely to work. BELIEVE side effects HCV medications have many side effects, such as depression, anxiety, diarrhea, nausea, vomiting and more that can affect how and if you take all of the medications. Depression can make you forgetful so you may not remember to take the medications, keep medical appointments or get lab work done. Depression is an illness that can be successfully treated. Make sure you tell your medical provider if you think you need help. There are side effects like diarrhea, vomiting and nausea that can affect how much of the medications are absorbed by the body. Diarrhea should be addressed quickly since all the food you eat, fluids you drink and medications you take are flushed through the body before nutrients or the medications can be processed. This is also true for vomiting. Remember to work closely with your medical provider to get these and other side effects treated. ADHERENCE It is now possible to cure about 80% (8 out of 10 people) who take the current HCV medications. Drug Resistance The way that the hepatitis C virus replicates and mutates can affect how well HCV medications work. HCV protease inhibitors work by attacking the virus and preventing or stopping the virus from making more copies of itself. But sometimes the medications are not strong enough or not enough of the medicine is absorbed by the body to stop the virus from replicating and mutating. This is called drug resistance. If a person develops drug resistance the HCV protease inhibitors may no longer work. Support People on HCV treatment will need support from all areas of life including family and friends. If possible check out a support group in your area. People who have been on treatment or people who are currently on treatment can help with advice and encouragement that is so vital to completing therapy. Exercise Staying active is also another important way to stay healthy. Talk with your doctor or nurse about what types of exercise and level of activity is right for you. Sleep Adequate sleep is important to staying healthy. The right amount of sleep will also make it easy to function during the day and lessen some of the side effects of HCV treatment. Try to get at least 8 hours of sleep every night. This can be difficult because some of the side effects of HCV treatment like insomnia and itching can make falling and staying asleep difficult. There are many steps and medications you can take to relieve insomnia and itching that will help you to achieve restful sleep. See your doctor or nurse for advice and find out whether you need medications to help you sleep. Food, Diet & Nutrition A healthy diet that includes a lot of vegetables, fruit and lean meat is important for everyone, especially people who are living with chronic hepatitis C. Eating healthily is even more important if you are on HCV treatment. If possible consult a dietitian before starting treatment or check out www.myplate.gov for information about eating healthily. Food is also important when taking the HCV medications. Ribavirin and HCV protease inhibitors are pills that should be taken with certain types of food so the body can absorb the right amount of the drugs into the bloodstream. It is important to keep the right level of the medicines in your bloodstream to help attack and kill the virus, and to help prevent the virus from “escaping.” If the virus is able to escape the effects of the drugs the virus can become resistant to the medications. If you develop drug resistance it would mean that treatment will no longer work and other brands of HCV protease drugs may not work. 100% adherence is a difficult goal for most people to achieve—doses can be missed and the right kind of food may not be always be available. Still, people should strive to take all the medications as close to 100% of the time as possible to increase the chances of being cured. Your doctor or nurse will instruct you on how and when to take the medications and what to do if you miss a dose. A major symptom of hepatitis C and a side effect of the medications to treat it are forgetfulness and lack of concentration—this is called “brain fog.” This makes trying to remember to take all of the medications all of the time even more difficult. However, there are many simple tips that may help. We have come a long way in our understanding of hepatitis C and the medications used to treat it. We now have treatments that can cure about 80% or 8 out of 10 of the people who take it. HCV treatment is not easy and it is best to approach it as a full-time job. This will help to maximize the chances of achieving the goal—a viral cure! Of course, not everyone can be cured at this time even with 100% adherence. But regardless of whether treatment is successful you should take pride in the fact that you did all you could to make treatment a success. That fact alone should be reason to celebrate. T reatment of chronic hepatitis C for people with HCV genotype 1 includes: • Pegylated interferon is a shot taken once a week • Ribavirin is a pill taken twice daily with food • An HCV protease inhibitor: – Telaprevir (brand name Incivek) is a pill taken every 7 to 9 hours with food that is not low fat – Boceprevir (brand name Victrelis) is a pill taken every 7 to 9 hours with a light meal or snack • Use the pill blister packs, and/or daily bottles that came with the pills or buy a pill organizer—this will help you keep track of how many pills you have taken. • Be prepared for any type of situation that may arise by keeping a daily packet of pills and food in the car, at work or over at a friend’s house. Drug stores sell small plastic zip lock bags to use for daily packets. Snack bars come in low and high fat options that are easy to carry with you wherever you may go. • The pharmaceutical companies have many support services for people who are taking their medications—resources are provided at the end of this brochure. Use all and any that are available. • Keep all medical appointments and tests—this will help you and your doctor or nurse make sure the treatment is working, and it will help to identify and manage the side effects. important! Note: Check with your doctor or nurse about the type of foods you should eat and when you should take the pills. curing HCV TIPS • Keep a regular schedule of eating and sleeping, and build in time for relaxing. A regular routine will help with remembering when to take the medications. For example, if you take your morning medications with breakfast, eating breakfast will be a “trigger” for you to remember to take the pills. • Use alarms to remind you to take the medications. There are vibration alarms to use when out in public. •Develop a network of support services that includes medical providers, family, and friends. Consider checking out a support group in your area—people who are living with hepatitis C and who have been through treatment can provide tips and support to get you through the difficult times. • Treat side effects before the side effects become worse. being studied to treat If treatment doesn’t work this time around, remember there are many medications that are don’t lose hope! cured—so be can c hepatitis c and there will be a time in the future when everyone with hepatitis
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