sign in sign up
<<
Home , Hepatitis A

a guide to understanding C HCVHCV 2014

Alan Franciscus Foreword When I was diagnosed in 1996 there was almost no information about available and the information that was available was often incorrect. At that time, treatment consisted of standard interferon monotherapy that you would inject under the skin three times a week for six months. For the most common strain of hepatitis C—genotype 1—there was only a 9% chance of being cured of hepatitis C. Now it’s 2014 and there is a wealth of information to help guide people with HCV. Treatments for hepatitis C have progressed to the point that up to 90% of people who take the treatments can be cured, and, for many people, the treatment duration is much shorter than before. We already have interferon-free therapy for HCV genotypes 2 and 3 and for some people with HCV gentoype 1. Within a year we will have interferon- free therapies for everyone with hepatitis C. Importantly, the side effects of treatment will be much less than those people experience with interferon-based therapies. Medical providers are much more knowledgeable about diagnosis, management and treatment of hepatitis C. There is also a public campaign to raise awareness and test the largest patient population—Baby Boomers. The most important steps that people can take is to learn as much as they can about hepatitis C and work with their medical provider to stay as healthy as possible–and that may include seeking HCV treatment now. This Guide is meant to help you understand hepatitis C and provide some strategies to become healthier and live longer. I hope that you are as excited as I am about the future of hepatitis C. As I stated above, we have come a long way in our understanding and treatment of hepatitis C, but much more needs to be done to make sure that all of the people who are undiagnosed are tested and provided with care, support and access to medications that can cure hepatitis C. Stay tuned to the hepatitis C Support Project and our website www.hcvadvocate.org for the latest information about every aspect of hepatitis C.

!"#$%&'#$()*(+*

Get Tested. Get Treated. Get Cured.

The information in this booklet is designed to help you understand and manage HCV and is not intended as medical advice. All people with HCV should consult a medical practitioner for diagnosis and treatment of HCV. Table of Contents

Introduction ...... 2

HCV and Prevention ...... 3

HCV Disease Progression...... 4

Symptoms of HCV ...... 4

Diagnosing HCV ...... 6

HCV Treatment Options...... 7

Treatment Considerations ...... 10

HCV Management ...... 11

Conclusion ...... 13

Resources ...... 14

Glossary ...... 15

1945 to 1965 GET TESTED The Centers for Disease Control and Prevention (CDC) and the United States Preventive Ser- vices Task Force (USPSTF) recom- mend a one-time test for everyone born from 1945 to 1965.

Hepatitis C Support Project 1 Introduction

is a blood-borne that was previously referred to as non-A/ non-B hepatitis. HCV has seven major genotypes, numbered 1–7. Genotype 1 is the most common in the U.S. HCV enters the body through direct blood exposure. The virus attacks cells in the liv- er, where it multiplies (replicates). HCV causes inflamma- tion and kills liver cells. Up to 75% of people initially infected with HCV may become chronically infected—that is, the infec- tion does not clear up within six months. Most people with chronic HCV do not have symptoms and lead normal lives. How- ever, in 10–25% of people with chronic HCV, the disease pro- gresses over a period of 10–40 years, and may lead to serious liver damage, (scarring), and liver cancer. Today, HCV is the leading reason for liver transplants in the U.S. There is currently no for HCV; however, treatment can cure some people of HCV and/or stop disease progression.

Your Liver and Hepatitis sorb through the skin. The liver converts substances you eat and drink into energy and the building blocks for muscles, hor- mones, clotting factors, and immune fac- tors. It stores many vitamins, minerals, and for later use. Liver cells produce , which helps the body digest and absorb nutrients. The liver detoxifies sub- stances that are harmful to the body. It can re-generate its own tissue—as much as 3/4 of the liver can regenerate within a few The liver is the largest internal or- weeks. gan, located behind the ribcage on Hepatitis simply means inflammation of the right side of the abdomen. It the liver. It may be caused by , tox- weighs approximately three pounds ic chemicals, drugs, or other factors. The and is about the size of a football. most common forms of in- The liver is responsible for some 500 clude hepatitis A virus (HAV), vital functions. It processes virtually virus (HBV), and HCV. These three viruses everything you eat, breathe, or ab- are related only in that they affect the liver.

2 Hepatitis C Support Project HCV Transmission and Prevention

HCV Transmission mother’s blood; mothers co-infected with HCV is transmitted by direct blood-to-blood HBV or HIV are more likely to transmit HCV contact. Transmission routes include sharing to their babies. Some studies have shown drug paraphernalia for both injection and that HCV is present in breast milk, but non-injection drugs (needles, cookers, tour- breast-feeding is safe. niquets, straws, pipes, etc.). Needles used for The transmission route for up to 10% of tattooing, body piercing, and acupuncture individuals infected with HCV cannot be may also spread HCV. Sharing personal items identified. HCV is not transmitted by casual such as razors, toothbrushes, or nail files is contact such as sneezing, coughing, hug- a less likely, but still possible, transmission ging, or sharing eating utensils and drinking route. glasses. Do not share needles or any other HCV Prevention drug paraphernalia, razors, tooth- Do not share needles or any other drug brushes, clippers, nail files, or any paraphernalia, razors, toothbrushes, clip- items that might contain blood. pers, nail files, or any items that may come in contact with blood. Make sure that instru- Before 1992, many people contracted HCV ments used for tattooing, body piercing, and through blood or blood product transfusions. acupuncture are properly sterilized; prac- In 1992, a reliable blood test to identify HCV titioners today should only use disposable became available. Since then, the needles. All cuts and wounds should be cov- blood supply has been screened. Now the ered. risk is considered to be less than 1 chance Although sexual transmission appears to per 2 million units of transfused blood. A be rare, you can reduce the risk by practicing small percentage of people (estimated at safer sex, including the use of condoms and 0–3% for monogamous heterosexuals) may barriers. Most experts recommend that if you contract HCV through unprotected sexual ac- are in a stable, long-term monogamous re- tivity. Among people in so-called “high risk” lationship you do not need to change your groups (gay men, sex workers, people with current sexual practices, although partners multiple sex partners, people with STDs), should discuss safer sex options if either sexual transmission appears to be somewhat partner is concerned about transmission. If a more common. woman has HCV, avoid sex during monthly Healthcare workers are at risk for HCV periods. Proper dental can prevent because of needlestick accidents bleeding gums, another possible transmis- and unavoidable situations that may result sion route. in direct contact with blood from an infected Notify your doctor, dentist, and other individual. healthcare professionals if you have HCV. Perinatal transmission from mothers with Healthcare workers should observe stan- HCV to their infants before or during birth dard universal precautions when dealing occurs in about 4-7% of births. Whether with blood. If you are a woman with HCV, or not transmission occurs may depend on talk to your doctor if you are thinking about the presence of high levels of HCV in the becoming pregnant.

Hepatitis C Support Project 3 HCVIntroduction Disease Progression

fter exposure to HCV, the window period usually lasts 2–26 weeks. The initial phase of hepatitis C is called infection. Acute HCV usually resolves after 2–12 weeks. However, up to 75% of people ini- tially infected with HCV do not clear the virus from their bodies, and become chronically infected. Most people with chronic HCV do not have symptoms and lead relatively normal lives. But in 10–25% of people, the disease progresses over the course of 10–40 years. Chronic HCV infection can lead to liver damage, the development of fibrous tissue in the liver (fibrosis), fat deposits in the liver (steato- sis), liver scarring (cirrhosis), and liver cancer. In severe cases, a person may require a liver transplant to avoid death.

Cirrhosis is a process in which liver cells such as high blood pressure in the vein that are damaged or killed and replaced with leads to the liver (portal hypertension), scar tissue. Extensive scar tissue forma- varices (stretched and weakened blood tion impairs the flow of blood through vessels) in the (swallowing the liver, causing more liver cell death tube) and stomach, internal bleeding, and a loss of liver function. ascites (fluid accumulation), and other potentially life-threatening conditions. Compensated Cirrhosis means that the liv- They may also experience encephalopathy er is heavily scarred but can still perform (reversible mental confusion). most functions; people with compensat- ed cirrhosis exhibit few or no symptoms. Liver cancer usually develops at later stag- es of HCV infection, typically after 25–30 Decompensated Cirrhosis means that the years. The type of liver cancer associated liver is extensively scarred and unable to with HCV is called primary hepatocellular function. People with decompensated carcinoma (HCC). cirrhosis often develop complications

Symptoms of HCV any people report few or no symptoms during the acute phase of HCV infection. Most people with chronic HCV also do not have symptoms and lead relatively normal lives. However, others experience mild flu-like symp- toms including , , , headaches, loss of appetite, abdominal pain, night sweats, and muscle or joint pain. Over time (often years or even decades) people with chronic HCV may develop various symptoms related to liver damage. Chronic HCV is also associated with a wide variety of related conditions.

4 Hepatitis C Support Project HCV Transmission and Prevention Symptoms of HCV

Symptoms Reported by People with HCV

Acute s -USCLE OR JOINT PAIN s !BDOMINAL PAIN s &REQUENT URINATION Hepatitis C s !BDOMINAL PAIN s $EPRESSION s *AUNDICE s &LU LIKE ILLNESS s !BDOMINAL s -OOD SWINGS s )NDIGESTION s &ATIGUE MILD TO BLOATING s h"RAIN FOGv s (EADACHES SEVERE Chronic Late-Stage s -USCLE OR JOINT PAIN s &EVER Hepatitis C Hepatitis C s !BDOMINAL PAIN s .IGHT SWEATS s &ATIGUE MILD TO with Cirrhosis s !BDOMINAL BLOATING s ,OSS OF APPETITE SEVERE s &ATIGUE MILD TO s $EPRESSION  s &EVER SEVERE s -OOD SWINGS s .AUSEA s ,OSS OF APPETITE s &EVER s #OGNITIVE DYSFUNCTION s 6OMITING ANOREXIA s ,OSS OF APPETITE s ,ACK OF CONCENTRATION s $IARRHEA s .AUSEA ANOREXIA s -ENTAL CONFUSION s *AUNDICE s )NDIGESTION s .AUSEA s $IZZINESS s )NDIGESTION s (EADACHES s 6OMITING s 0ERIPHERAL VISION s (EADACHES s -USCLE OR JOINT PAIN s &LUID RETENTION PROBLEMS

Conditions Linked to HCV A number of different conditions have conditions include certain types of arthri- been associated with HCV. Some of these tis (joint inflammation), (joint are autoimmune conditions, in which pain), thyroid disease, vasculitis (blood the immune system attacks the body’s vessel damage), and own tissues. Conditions sometimes seen (high levels of a blood protein that settles in people with chronic HCV include in the kidneys, skin, and nerve endings). Sjögren’s syndrome (characterized by dry Most serious conditions are associated eyes and dry mouth), kidney conditions with late-stage HCV disease, when the such as glomerulonephritis, and skin liver is damaged and not able to func- conditions such as lichen planus (char- tion properly. Many people with HCV acterized by white lesions or bumps) and never experience any of these conditions. porphyria cutanea tarda (characterized Check with your doctor if you experience by a sun-sensitive rash). Other related any unusual symptoms.

The Centers for Disease Control and Prevention (CDC) estimates that more than 3 million Americans have chronic hepatitis C. Many experts believe the actual number is much higher.

Up to an estimated 15,000 Americans die annually of complications related to HCV. This figure is expected to triple in the next 10–20 years.

HCV is the leading reason for liver transplants in the U.S. HCV Facts Individuals with HCV should avoid drinking alcohol and using recreational drugs. Individuals with HCV should be vaccinated against hepatitis A and hepatitis B.

Hepatitis C Support Project 5 Diagnosing HCV

esting for HCV is not routinely done, so you may have to request a test from your physician. It is recommended that you use the same laboratory for all of your tests, since result ranges and accuracy can vary from lab to lab. Keep copies of your lab and biopsy results for future reference. The tests below can help determine whether you are infected with HCV and the state of disease progression.

HCV Tests Genotype Tests HCV ELISA Genotype tests are used to determine The HCV ELISA or EIA is a simple blood test what type(s) of HCV you have. This in- that can detect HCV antibodies. formation is useful for making treatment decisions, such as how much medication A positive HCV antibody test means that to use, how long treatment should last, a person has been infected at one time. what type of medicine to use, and the An HCV RNA or viral load test must be likelihood of responding to treatment. performed to find out whether a person is currently infected with the hepatitis Liver Biochemical/Function Tests C virus. There are various blood tests used to Rapid HCV Antibody Test assess how your liver is working. A point-of-care test that collects and processes The liver (hepatic) panel includes mea- a sample and gives results after 20 minutes. surements that indicate liver function. A fingerprick and whole blood draw has been The most common measurements are approved and a CLIA waver issued by the Food alanine aminotransferase (ALT, former- and Drug Administration (FDA). ly known as SGPT) and aspartate ami- notransferase (AST, formerly known as SGOT). ALT and AST are enzymes that Viral Load Tests are released into the blood when the Viral load tests measure the amount of HCV liver is damaged. They are often elevat- circulating in the blood. HCV viral load is ex- ed in people with HCV infection. Many pressed as a standard unit of measurement people with HCV have mild to moder- called International Units. There are three dif- ate elevations of these two enzymes, ferent types of viral load test: HCV RNA PCR, which are often the first indication that branched-chain DNA (bDNA), and transcrip- they are infected. Other measurements tion mediated amplification, or TMA. The include alkaline phosphatase (ALP) and bDNA assay is the least expensive, but also the gamma-glutamyl transpeptidase (GGT). least sensitive. Viral load tests are used to con- Abnormal levels may indicate cirrhosis firm active HCV infection, to predict medical or bile duct blockage, as well as other treatment response, and to measure how well abnormalities. In addition, your doctor the medications are working against the virus may measure prothrombin time (an indi- during treatment. An association between viral cation of blood clotting speed) and bili- load and disease progression has not been es- rubin levels. is a pigment that tablished.

6 Hepatitis C Support Project HCV Transmission and Prevention Diagnosing HCV

is often present in the blood of people with inflammation, the amount of scarring, and liver inflammation; high bilirubin levels re- the general health of the liver. sult in . Many factors such as the The Fibroscan is another diagnostic tool use of medications and alcohol may cause that is used to evaluate liver health. The abnormal lab results. Before drawing your Fibroscan is based on a technology using a own conclusions, check with a healthcare machine that sends a vibration wave through provider. the liver to detect and analyze any fibrosis. These and other diagnostic tests are dis- Liver Biopsies cussed in a fact sheet from the HCV Advo- cate website. Biopsies are done to measure the severity of

HCV Treatment Options

ntil 1998, interferon alone (monotherapy) was the only approved treatment for HCV infection. Today, the standard of care for treating people with HCV genotype 1 is the combination of an HCV inhibitor and pegylated interferon plus ribavirin. People with HCV genotype 2 or 3 are treated with a combination of an HCV inhibitor and ribavi- rin. Studies are underway to treat HCV genotype 1 with a combina- tion of different types of HCV inhibitors without interferon. There are also several alternative and complementary treatments that people have used to treat HCV infection, for example, milk this- tle (silymarin) and licorice root (glycyrrhizin). Herbal and other al- ternative therapies are discussed in a fact sheet ffrom the HCV Advocate website.

Approved Pharmaceutical Treatments is a long-acting form of interferon that can Standard interferon, pegylated inter- be injected once a week. PEG maintains a feron, an HCV inhibitor and ribavirin more constant level of interferon in the blood are the only FDA-approved medications and better reduces the ability of HCV to rep- for treating hepatitis C. Interferon, giv- licate. An HCV inhibitor is a direct-acting en by injection, is a genetically engi- antiviral that inhibits the replication process neered product based on a set of natu- of the . Ribavirin is an oral ral immune system proteins found in antiviral medication used in combination the body. Pegylated interferon (PEG) with interferon to treat HCV infection.

Hepatitis C Support Project 7 HCVIntroduction Treatment Options

Ribavirin or an HCV inhibitor are not effec- Genotypes 2 and 3 tive when used alone. The current standard People with HCV genotype 2 or 3 are typ- of care is a combination of an HCV inhibi- ically treated with a combination of an tor plus ribavirin for genotypes 2 and 3, HCV inhibitor (sofosbuvir) plus ribavirin. and pegylated interferon, ribavirin and an The cure rates for people with HCV geno- HCV inhibitor for genotype 1. type 2 who were treated for 12 weeks was ´Pegylated interferon is a medica- 93% and 84% in people with HCV geno- tion that is given by injection (right type 3 who were treated for 24 weeks. underneath the skin) once-a-week ´ Ribavirin is a pill taken orally RIBAVIRIN WARNING twice a day with food. Ribavirin has been shown to cause ´ An HCV inhibitor is a pill that birth defects and miscarriages. Women may or may not need to be taken of childbearing age, their male part- with food. ners, and female partners of male patients taking ribavirin must use at Genotype 1 least two effective forms of contra- People with HCV genotype 1 who have nev- ception during treatment and during er been treated (treatment-naïve) or who the six-month post-treatment follow- have had a previous course of interferon/ up period. ribavirin (treatment-experienced) are treat- ed with a triple combination of an HCV in- hibitor (pills), pegylated interferon (injec- Virological Response tion) and ribavirin (pills). People who take Virological response is defined as how a per- the triple combination have up to a 90% son’s viral load level responds to treatment. chance of curing hepatitis C. When a person’s HCV RNA (viral load) be- comes undetectable after HCV therapy has Treatment duration is usually based on the been initiated, this is considered a virologi- type of response at 4 weeks (rapid virologi- cal response. If the HCV RNA remains un- cal response (RVR)) and 12 weeks (early detectable beyond six months, the term sus- virological response (EVR)), and other time tained virological response (SVR) is used. points during therapy. Based on these fac- tors, treatment can be tailored to 12, 24, 36 Rapid Virological Response (RVR) means that or 48 weeks total treatment duration. the HCV RNA (viral load) is undetectable after 4 weeks of treatment. There are currently three HCV inhib- itors in clinical development—pro- Complete Rapid Virological Response (cRVR) tease, polymerase and NS5a. They means that HCV RNA (viral load) is unde- ‘inhibit’ the hepatitis C virus from tectable at treatment week 4 and 12. replicating (making more viruses).

8 Hepatitis C Support Project HCV Transmission and Prevention HCV Treatment Options

Measuring Treatment Response Direct-Acting Antivirals People receiving HCV treatment should There are many new drugs called HCV be tested on a regular basis to monitor inhibitors that stop the hepatitis C virus side effects and to make sure that they from replicating—protease, NS5A and are responding to therapy. Increasingly, polymerase. Some of these medications treatment duration is being guided by are already approved to treat HCV and type of response (response guided thera- there are many others that are currently py) at certain time points during therapy. in clinical trials to treat hepatitis C.

The treatment duration for people with HCV HCV genotype 1 is guided by treatment There is currently no vaccine for HCV, response at certain time points during as there are for HAV and HBV. HCV vac- therapy for a total treatment duration of cines will be difficult to develop due to 12 to 48 weeks. HCV treatment duration the virus’ different genotypes and its for people with HCV genotypes 2 or 3 is ability to change, or mutate, during in- typically 12-24 weeks. If someone has fection. Some progress is being made, not responded after certain times during but an effective HCV vaccine is not ex- treatment, further therapy is unlikely to pected for many years. clear the virus and treatment should be stopped. Clinical Trials The process of testing a new drug in- Investigational Pharmaceutical Therapies volves establishing its safety and tol- HCV therapy has seen impressive advances, erability (Phase I trials), measuring its given that the virus was only identified effectiveness (Phase II trials), and com- in 1989. However, current treatment paring the new drug to current standard options can have many undesired side treatments (Phase III trials). After the effects and treatment success may not FDA has granted approval and the new always be achieved. There is much drug is marketed, ongoing studies are research underway to develop new and done to refine the treatment for maxi- better HCV treatment options without mum safety and effectiveness (Phase IV, some of the serious side effects of current or postmarketing trials). HCV medications. A combination therapy with two or more agents is more effective For the most current informa- than monotherapy for treating HCV. For tion about investigational phar- this reason, new clinical trials will focus maceutical therapies visit the on testing the effectiveness of combining HCV Advocate News & Pipeline HCV inhibitors with and without ribavirin. Blog.

Hepatitis C Support Project 9 Introduction

HCV Treatment Options

Clinical trials can be an excellent way to ´ Drink plenty of fluids (without caffeine or al- obtain free medication; some trials may also cohol); this helps to relieve side effects. It is espe- pick up some or all of the costs of physician cially important to drink water or clear fruit juices visits and lab tests. However, if you enroll in a (apple, cranberry, or grape) right before and right clinical trial you may not be chosen to receive after self-injection. the new drug or the most effective dosage. You ´ Some people take an over-the counter pain re- should read all clinical trial information and liever one hour before their injection to help re- make sure that you fully understand the terms lieve side effects. Others may find that taking a and conditions of the study, such as the with- pain reliever 2 to 3 hours after the injection works holding of viral load information from the par- better to relieve the pain. ticipant. For more information about clinical ´ Exercise is one of the most important compo- trials go to www.clinicaltrials.gov nents of health maintenance, and this remains true during therapy. Physical activity helps you stay positive and focused and improves well-be- Treatment Considerations ing. Moderation is the key to physical activity. Some good choices for exercise include stretching, walking, yoga, or any activity that you enjoy. Managing Drug Side Effects The most common side effects of interferon, Regular exercise may help alleviate ribavirin and an HCV protease inhibitor include some side effects, such as fatigue, mild flu-like symptoms, muscle and joint pain, associated with interferon therapy. nausea, headaches, fatigue, loss of appetite, dry skin, rashes, anxiety, depression, and in- For some people, physical side effects are somnia. Some physical symptoms may be re- worse when the drug is started and may di- duced with ibuprofen or acetaminophen in low minish over time. doses (2 grams per day or less). High doses of The most common reason for stopping acetaminophen can be toxic to the liver. People HCV therapy is anemia (low red blood cell experiencing anxiety, irritability, or depression count), thrombocytopenia (low platelet count), may be helped with mild tranquilizers or anti- and neutropenia (low white blood cell count). depressants. Check with your doctor before Medications used to control these conditions in- taking any of these medications. clude erythropoietin (for anemia), and GM-CSF The key to managing HCV treatment-relat- (granulocyte macrophage colony-stimulating ed side effects is to treat them as soon as they factor) for low white blood cells. A low platelet occur. Always report any serious side effects count may indicate cirrhosis, and care should to your medical provider as soon as possible be taken during treatment. Some people may before they become severe. develop thyroid dysfunction while on treat- There are many simple tips to help alle- ment with interferon. Thyroid function should viate some of the less serious side effects of be closely monitored prior to starting treatment treatment including: and then every three months during therapy. ´Take the pegylated interferon before bedtime; In most people, thyroid function returns to nor- this allows most people to sleep through the worst mal once therapy is stopped, but some people of the side effects since the majority usually occur may develop irreversible thyroid problems that within 4-6 hours after the injection. will require continuous medication.

10 Hepatitis C Support Project HCV Transmission and HCVPrevention Management

can be a difficult disease to manage. Lifestyle plays an integral part in HCV disease management and treatment. Proper diet, exercise, and stress manage- HCV ment are all critical to maintaining good health. Many physicians are not fully educated about HCV, and you may have to educate both conventional and alternative practitioners. If you have a family doctor, you may want to quiz him or her about HCV. It is important to find a doctor who is both knowledgeable about and sympathetic to people with HCV. If you are not comfortable with your doctor, look for a new one; ask family or friends for recommen- dations. Once your HCV diagnosis has been confirmed, your family doctor or general practitioner should send you to a specialist. Gener- ally, you will be referred to a gastroenterologist (a digestive disease specialist) or a hepatologist (a liver disease specialist).

Nutrition cooked shellfish (even if they are immune Since the liver processes and detoxifies to hepatitis A). It is often recommended everything you eat and drink, a healthy, well- that people with HCV should avoid balanced diet is essential. A diet that follows high in fat, , or . Caffeine is a the general guidelines for nutritional health chemical that must be processed by the based on www.choosemyplate.gov is gener- liver, and it is recommended that you ally recommended. Such a diet is low in fat limit your caffeine intake by reducing and sodium, high in complex carbohydrates, your over-consumption of coffee, tea, and and has adequate protein. soda. Because chocolate has a high fat In the past, diet modification was seen (and in some types, caffeine) content, eat as an important part of HCV management. it in moderation. Some people with HCV This is less true today. However, avoiding cannot tolerate dairy products. If this is certain foods may reduce the processing the case for you, you may wish to use and detoxification work the liver must do, nondairy substitutes such as soy milk or and may improve the overall health of your rice milk. liver. Processed foods often contain chemi- A well-balanced diet should contain cal additives, so reduce your consumption of all the essential vitamins and minerals canned, frozen, and other preserved foods. you need, but some people also take vi- Eating organic fruits and vegetables can help tamin supplements. Taking megavitamin you avoid the and fertilizers used supplements may be harmful. Avoid tak- to grow nonorganic produce. Read all labels ing high doses of vitamins A and D; vi- to acquaint yourself with ingredients. tamin A can be very toxic to the liver. If Protein derived from poultry, fish, and you need extra vitamins and/or minerals, vegetable sources may be most beneficial. It choose a low- supplement without is recommended that people with any type iron unless otherwise directed by a medi- of liver disease should not eat raw or under- cal provider.

Hepatitis C Support Project 11 Introduction

HCV Management

Most people would benefit from a consulta- its and do not overextend yourself. When tion with a dietitian. Do not undertake any you plan activities, allow time in between unconventional diet without consulting a for relaxation or naps. Remember that your medical practitioner. In addition, be sure to health is important—learn to say “no” to inform your doctor about any vitamins and friends and family who have unrealistic ex- minerals you are taking. pectations of your energy level. ´ Time management Alcohol and Drugs Plan activities well in advance and try Many studies have shown that heavy to make realistic work and play schedules. consumption of alcohol can severely ac- Use a daily planner to help with organizing celerate HCV disease progression. It is not and remembering activities. Consult your yet known if light or moderate alcohol con- planner regularly when making appoint- sumption is harmful to the liver, but most ments and scheduling daily tasks. Don’t experts recommend that people with HCV forget to include restful activities. should avoid alcohol. Many drugs (whether prescription, over-the-counter, or recreation- ´ Meditation al) must be processed by the liver. People Meditation can be a useful tool in man- with HCV should avoid recreational drugs aging and living with HCV or any chron- and tobacco. Check with your doctor before ic illness. It is simple and easy to learn. taking over-the-counter or prescription med- Meditation can reduce stress and help you ications. Certain herbal remedies have also maintain a healthy outlook on life. been shown to damage the liver.

General Wellness HAV AND HBV ´ Stress management Controlling stress is a major factor in man- It is strongly recommended that aging HCV disease. Living with a chronic people with HCV get vaccinated disease is stressful. Many people report against hepatitis A and B if they are not already immune. Severe “flare-ups” (periods of increased symptoms) HAV and HBV have been following episodes of stress. Exercise, medi- reported in people already infect- tation, and time management can all help ed with HCV. The hepatitis A vac- reduce stress. Try to maintain a realistic pic- cine consists of two doses within ture of your health and a positive attitude. a six-month period, and the hepati- Understanding the severity of your liver dis- tis B vaccine requires three doses ease is an important part of having a realis- within a six-month period. Both vac- tic picture of your condition. cines are made from killed viruses and are considered safe and effec- ´ Managing fatigue tive. A combination HAV/HBV vaccine Fatigue and low energy levels are com- as well as an accelerated dosing schedule is FDA approved. mon in people with HCV. Learn your lim-

12 Hepatitis C Support Project HCV Management

´ Exercise contacting the organizations listed at the end Moderate exercise is highly recommended of this guide. for all individuals who are not in an acute The Internet or end-stage phase of HCV. Exercise can The Internet contains a wealth of informa- help reduce stress and is important for tion, both good and bad. Always check the maintaining good health. However, too sources of the information you find. Look for much exercise can lead to flare-ups. Se- dates and references. Challenge any informa- lect low impact types of exercise such as tion you believe is in error. Be skeptical of walking and swimming. Slowly increase websites that contain unfounded claims or your workouts until the desired level is other misleading information. Remember that achieved. Always check with your doctor not all the information you find on the Inter- before starting any exercise program. net is correct. Talk to your doctor regarding Support Groups any information you are concerned about. Many people with HCV feel isolated Common sense can take you a long way! Visit and find it difficult to cope with the effects our website at www.hcvadvocate.org for rec- of living with a chronic illness. A support ommended sites. group can offer a safe space to discuss the emotional issues surrounding HCV. Fur- ENVIRONMENTAL thermore, the information shared by peer Everything you breathe or ab- members can be helpful in making deci- sorb through the skin must be sions about a wide variety of issues facing filtered by the liver. Fumes from people with HCV. It is highly recommended paint thinners, pesticides, and that you join a support group while under- aerosol sprays can damage your going HCV treatment. Support group infor- liver and should be avoided. mation can be found on our website or by Conclusion

Chronic hepatitis C is a liver disease that within a couple of years. Nevertheless, talk can have serious consequences. It is impor- with a medical provider to find out if it is safe tant to remember that many people do not to wait. Additionally, lifestyle changes such as experience symptoms or disease progres- good nutrition, exercise, and stress manage- sion. Those who do eventually experience ment can help alleviate side effects and may disease progression may remain symptom- slow disease progression. free for decades. However, some people de- We hope this information has helped you velop serious liver disease that can result in to understand the hepatitis C virus and how it liver failure and death. There are effective can affect your physical and emotional health. treatments now, and it is believed that even We welcome any suggestions or ideas for im- better treatment options will be available proving this guide.

Hepatitis C Support Project 13 Introduction Resources

For more information about HCV, contact the following organizations

‡ !"#$%&!'($)*)*+,-./ www.hivandhepatitis.com/ ‡ 1DWLRQDO$,'67UHDWPHQW$GYRFDF\3URMHFW 1$7$3 www.natap.org/ ‡ 1DWLRQDO+&9+HOSOLQH 877-HELP-4-HEP (877-435-7443)

Suggested Reading t -JWJOHXJUI)FQBUJUJT$"4VSWJWPST(VJEF by Gregory T. Everson, MD, and Hedy Weinberg. Hatherleigh Press. t 'SFFGSPN)FQBUJUJT$:PVS$PNQMFUF(VJEFUP)FBMJOH)FQBUJUJT$ by Lucinda K. Porter, RN. Square One Publishers. t )FQBUJUJT$5SFBUNFOU0OF4UFQBUB5JNF by Lucinda K. Porter, RN. Demos Health.

Pharmaceutical Resources / Patient Assistance Programs ‡ *HQHQWHFK3(*$6<6 ) www.genentechaccesssolutions.com/portal/site/AS/ ‡ *LOHDG6FLHQFHV0<3$7+  www.sovaldi.com ‡ -DQVVHQ2/<6,2  !!!"#$%&'#"(#) ‡ .DGPRQ3KDUPDFHXWLFDOV

For more information about clinical trials t www.clinicaltrials.gov

Tattoo resources If you are thinking about getting a tattoo it is important to realize that there is a very real chance that you could get hepatitis B, hepatitis C or another infection while having a tattoo if safety prac- tices are not followed very carefully. Find out more at: www.hepatitistattoos.org

14 Hepatitis C Support Project Glossary

ACUTE: rapid-onset, short-term initial stage of a disease. BIOPSY (BX): a procedure in which a sample of cells Contrast with chronic. or tissue is taken for laboratory examination. Liver biopsies are used to monitor liver disease progression ACUTE HEPATITIS: the initial stage of viral hepatitis following in people with HCV. infection. In HCV, acute hepatitis refers to the first six months of infection. BRAIN FOG: mild mental confusion, memory loss, and/or lack of concentration and alertness. May be a ADVERSE REACTION (SIDE EFFECT): an undesired action symptom of toxic chemical build-up due to impaired or effect of a drug or other treatment. liver function. See .

ALOPECIA: hair loss. cEVR: see complete early virological response.

ALT: see alanine aminotransferase. CHRONIC: a long-term or persistent disease. Contrast with acute. ANEMIA (adjective ANEMIC): reduced number of red blood cells or reduced ability of blood to carry oxygen. There are CIRRHOSIS: a type of liver damage in which normal several types of anemia, all with different causes. Symptoms liver cells are replaced with fibrous scar tissue. may include fatigue, weakness, pale skin, and difficulty breathing. COINFECTION: concurrent infection with more than one disease-causing organism (e.g., HCV and HIV). ANTIBODY (IMMUNOGLOBULIN): A protein that the body makes to fight specific invaders. The antibody attaches itself COMPLETE EARLY VIROLOGICAL RESPONSE to the invaders and targets them for destruction. The presence (cEVR): HCV RNA negative at treatment week 12. of antibodies indicates current infection with or past exposure CYTOPENIA: low levels of blood cells. to a pathogen. DAA’S: see direct-acting antivirals. ARTHRALGIA: joint pain. DIRECT-ACTING ANTIVIRALS (DAA’S): There are AST (formerly SGOT): an enzyme (also called aspartate 3 categories of direct antivirals—protease inhibitors, transaminase) produced in the liver. When liver cells are polymerase inhibitors and NS5a. DAA’s target viral damaged, AST is released. Elevated levels may indicate liver enzymes that are important for replication of hepatitis disease, but are also seen in people with muscle damage. A C and block these enzymes from allowing the hepatitis normal level is below 42 IU/L. C virus to replicate. AUTOIMMUNE RESPONSE (AUTOIMMUNITY): a EARLY VIROLOGICAL RESPONSE (EVR): 2 log condition in which a person’s immune system produces 10 drop in HCV RNA at treatment week 12. antibodies that attack the body’s own tissues. Several conditions associated with hepatitis C (e.g., lichen planus, EDEMA: swelling caused by accumulation of fluid in Sjögren’s syndrome) appear to have an autoimmune aspect. body tissues.

BID: taken twice daily. EFFICACY: effectiveness; the ability to achieve a desired result. BILIRUBIN: a yellowish pigment released when red blood cells are broken down. Normally bilirubin is processed and ENCEPHALOPATHY: disease of the brain. excreted by the liver. An excess level of bilirubin in the blood (hyperbilirubinemia) may indicate liver damage, and can lead END-OF-TREATMENT RESPONSE (EOT OR ETR): to jaundice (yellowing of the skin and whites of the eyes), undetectable HCV RNA at the completion of treatment. pale-colored stools, and dark . A normal bilirubin level is below 1.3mg. EXTENDED RAPID VIROLOGICAL RESPONSE (eRVR): HCV RNA negative at treatment week 4 and 12.

Hepatitis C Support Project 15 Introduction Glossary

EXTRAHEPATIC: outside the liver. LIVER: a large organ on the upper right side of the abdomen that plays an important role in the FDA: Food and Drug Administration. of sugars and fats, synthesizes several proteins, and FIBROSIS (ADJECTIVE FIBROTIC): liver damage in which filters toxins from the blood. fibrous tissue develops and replaces normal cells. MALAISE: a generalized feeling of illness and GENOTYPE: the genetic makeup of an organism. HCV has discomfort; a flu-like feeling. seven major genotypes (designated by the numbers 1 through 7). In the U.S., genotype 1a and 1b are most prevalent. MONOTHERAPY: use of a single drug for treatment. Monotherapy for HCV (interferon alone) is no longer HCV RNA: the genetic material of the hepatitis C virus. A considered standard treatment. Contrast with combination detectable level of HCV RNA on a viral load test indicates that therapy. HCV is actively replicating. MYALGIA: muscle pain. HEPATIC: having to do with the liver; also, an herbal remedy used to treat liver conditions. NEUTROPENIA: an abnormally low number of neutrophils, resulting in increased susceptibility to HEPATIC ARTERIAL STENOSIS (HAS): narrowing of the infection. hepatic artery. NEUTROPHIL: the most common type of immune HEPATIC PANEL: liver function tests. system white blood cell. Neutrophils are phagocytes HEPATITIS: inflammation of the liver. Hepatitis may have that engulf and destroy invading organisms such as various causes, including viruses, toxins, and heavy alcohol bacteria and fungi. consumption. NONRESPONDER: person who does not show (HCC): a type of primary improvement while undergoing treatment. In HCV, a liver cancer seen in some people with long-term liver damage nonresponder does not achieve normal ALT levels or due to chronic hepatitis C or hepatitis B. an undetectable viral load.

HEPATOTOXICITY (ADJECTIVE HEPATOTOXIC): toxic or NS5A INHIBITOR: an HCV medication that inhibits poisonous to the liver. viral replication.

HISTOLOGY (ADJECTIVE HISTOLGICAL): the study or NULL RESPONDER: a person who does not achieve a examination of body tissues. In people with HCV, histological 2 log drop of HCV RNA by treatment week 12. improvement refers to improved liver tissue health, including 10 decreased inflammation and reduced fibrosis or cirrhosis. PEGYLATED INTERFERON (PEGINTRON, PEGASYS): a form of interferon that has a long half- HISTOLOGICAL RESPONSE: an improvement in liver tissue life in the body and can be injected less often (typically condition (e.g., reduced inflammation) in response to treatment. once per week). Pegylated interferon (brand names INTERFERON (IFN): a cytokine (messenger protein) that Peg-Intron, Pegasys) is superior to standard interferon plays a role in immune response. The four major classes of as a treatment for HCV. interferon are alpha, beta, gamma and lambda. PLATELET: see thrombocyte. JAUNDICE: (icterus, itcteric) yellowing of the skin and whites of the eyes due to high bilirubin levels in the blood. Jaundice POLYMERASE INHIBITOR: an agent that inhibits viral is often a sign of liver damage or gallbladder disease. replication by interfering with the polymerase enzyme.

16 Hepatitis C Support Project Glossary

PRIOR PARTIAL-RESPONDER: a person who has a 2 log10 SOFOSBUVIR (SOVALDI): a polymerase inhibitor drop in HCV RNA by treatment week 12, but who does not developed by Gilead to treat hepatitis C. become HCV RNA negative by end of treatment. (Example 2 STEATOSIS: buildup of fat tissue in the liver. log10 drop: 1,000,000 to d 10,000).

PROTEASE INHIBITOR: an agent that inhibits viral SUBCUTANEOUS (SQ): underneath the skin; usually replication by interfering with the virus’ protease enzyme. refers to a drug injected under the skin. SUSTAINED RESPONDER: a person who maintains a long- PRURITUS (ADJECTIVE PRURITIC): itchiness. term response to treatment. In HCV, a sustained responder has a long-term response (e.g., normal ALT levels, undetectable PSORIASIS: a skin condition characterized by scaling and HCV RNA) that persists after treatment is stopped. red patches, due to the overproduction of skin cells. SUSTAINED VIROLOGICAL RESPONSE (SVR): HCV QUALITATIVE: relating to, or expressed in terms of, quality. RNA negative 24 weeks after completion of treatment A qualitative viral load test measures the presence of a virus. (CURE).

QUANTITATIVE: relating to, or expressed in terms of, THROMBOCYTE (PLATELET): a type of blood cell quantity. A quantitative viral load test measures the amount responsible for normal blood clotting. of viral genetic material. THROMBOCYTOPENIA: an abnormally low number QUASISPECIES: individual genetic variants of HCV. Within of platelets, which may result in abnormal bleeding and a single genotype there may be multiple quasispecies. easy bruising.

RAPID VIROLOGICAL RESPONSE (RVR): HCV RNA THYROID GLAND: an organ at the base of the neck negative after 4 weeks of treatment. RVR is used to predict that produces thyroxin and other hormones involved in treatment response and to dictate how long people with HCV regulating metabolism. genotype 1 should be treated. TREATMENT-NAIVE: a person who has never been RELAPSE: recurrence of disease symptoms following a treated. period of improvement. In HCV, relapse can refer to an VACCINE: a preparation administered to stimulate an increase in viral load after it has been suppressed. immune response to protect a person from illness. A vaccine typically includes a small amount of a killed or RELAPSER: a person who becomes HCV RNA negative at end inactivated , or genetically engineered of treatment, but becomes HCV detectable within 24 weeks pieces. A therapeutic (treatment) vaccine is given after from the end of treatment (EOT). infection and is intended to reduce or stop disease progression. A preventive (prophylactic) vaccine is RESPONSE-GUIDED TREATMENT: response-guided intended to prevent initial infection. therapy uses HCV RNA testing during treatment to predict response and guide treatment duration for patients with VARICES (ADJECTIVE VARICEAL): an abnormally chronic hepatitis C. dilated or swollen vein, artery, or lymph vessel resulting from portal hypertension. RIBAVIRIN (RBV)—BRAND NAME REBETOL, COPEGUS, RIBASPHERE: an antiviral medication approved for use in VIRAL LOAD: the amount of virus in the blood or other combination with interferon to treat chronic HCV infection. tissues, usually expressed in terms of copies of viral genetic material (RNA or DNA). The presence of genetic SIMEPREVIR (OLYSIO): a protease inhibitor developed by material indicates that a virus is actively replicating. Janssen to treat hepatitis C.

Hepatitis C Support Project 17 Introduction Glossary

VIRAL REPLICATION: the ability of a virus to reproduce WESTERN MEDICINE: allopathic medicine; the type of copies of itself. medical practice.

VIROLOGICAL RESPONSE: reduction in viral replication in WHITE BLOOD CELL (WBC): leukocyte. response to treatment. In HCV, a complete virological response means that a person’s HCV RNA becomes undetectable with WINDOW PERIOD: the time between exposure to a treatment. microorganism and the production of sufficient antibodies to be detected on a test. VIRUS: a microscopic infectious organism that is unable to grow or replicate outside of a host cell. Viruses integrate their genetic material (DNA or RNA) into a host cell and take over the cell’s biological mechanisms to reproduce new virus particles.

Notes ______

18 Hepatitis C Support Project Introduction www.hcvadvocate.org

This information is provided by the Hepatitis C Support Project, a nonprofit organization for HCV education, support, and advocacy.

Reprint permission is granted and encouraged with credit to the Hepatitis C Support Project. a publication of the Hepatitis C Support Project

Executive Director Editor-in-Chief, HCSP Publications Alan Franciscus

Author Alan Franciscus

Managing Editor / Webmaster C.D. Mazoff, PhD

Design Paula Fener

Contact Information Hepatitis C Support Project PO BOX 15144 Sacramento, CA 95813 [email protected] www.hcvadvocate.org

version 6.4 June 2014 © 2014 Hepatitis C Support Project