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Hepatitis C Support Project
PO Box 427037
San Francisco, CA 94142-7037
The information in this document is designed to help you understand and manage HCV infection and is not intended as medical advice. All persons with HCV should consult a medical practitioner for diagnosis and treatment of HCV.
Permission to reprint this document is granted and encouraged with credit to the Hepatitis C Support Project www.hcvadvocate.org
Table of Contents
- Introduction: HCV
- HCV Transmission and Prevention
- HCV Disease Progression
- Symptoms of HCV
- Diagnosing HCV
- HCV Treatment Options
- HCV Treatment Considerations
- HCV Management
Section I: Introduction: HCV
The hepatitis C virus (HCV) is a blood-borne virus that was previously referred to as non-A/non-B hepatitis. HCV has six major genotypes (subtypes): 1a, 1b, 2a, 2b, 3, 4, 5, and 6. Genotypes 1a and 1b, which are the most common in the U.S., are more difficult to treat. HCV enters the body through direct blood exposure. The virus attacks cells in the liver, where it multiplies (replicates). HCV causes liver inflammation and kills liver cells. As many as 80-85% of people initially infected with HCV may become chronically infected-that is, the infection does not clear up within six months. Most people with chronic HCV do not have symptoms and lead normal lives. However, in 10-25% of people with chronic HCV, the disease progresses over a period of 10-40 years, and may lead to serious liver damage, cirrhosis, and/or liver cancer. Today HCV is the leading reason for liver transplants. There is currently no vaccine or cure for HCV, but various treatments can reduce or stop virus replication and help slow or stop disease progression.
- The National Institutes of Health (NIH) estimates that some four million Americans are infected with HCV.
- An estimated 8,000-10,000 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.
- Individuals with HCV should avoid drinking alcohol and/or using recreational drugs
- Individuals with HCV should be vaccinated against hepatitis A and hepatitis B if not already immune.
Your Liver and Hepatitis C
The liver is the largest internal organ, located behind the ribcage on the right side of the abdomen. It weighs approximately three pounds and is about the size of a football. The liver is responsible for some 500 vital bodily functions. It processes virtually everything you eat, breathe, or absorb through the skin. The liver converts substances you eat and drink into energy and the building blocks for muscles, hormones, clotting factors, and immune factors. It stores many vitamins, minerals, and sugars for later use by the body. Liver cells produce bile, which enables the body to digest food and absorb nutrients. The liver detoxifies substances that are harmful to the body. It can regenerate its own tissue-as much as 3/4 of the liver can regenerate within a few weeks.
Hepatitis simply means inflammation of the liver. It may be caused by viruses, toxic chemicals, drugs, or other factors. The most common forms of viral hepatitis include hepatitis A virus (HAV), hepatitis B virus (HBV), and HCV. These three viruses are related only in that they affect the liver.
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Section II: HCV Transmission and Prevention
HCV is transmitted by direct blood-to-blood contact. Transmission routes include sharing drug paraphernalia for both injection and non-injection drugs (needles, cookers, tourniquets, straws, pipes, etc.). Needles used for tattooing, body piercing, and acupuncture may also spread HCV. Sharing personal items such as razors, toothbrushes, or nail files is a less likely but still possible transmission route.
Before 1992, many people contracted HCV through blood or blood product transfusions. In 1992, a reliable blood test to identify HCV antibodies became available. Since then, the blood supply has been screened. Today the likelihood of contracting HCV through infected blood is less than .01%. A small percentage of people (estimated at 1-3%) may contract HCV through unprotected sexual activity. Healthcare workers are at risk for HCV infection because needle-stick accidents and unavoidable situations may result in direct contact with blood from an infected individual.
Perinatal transmission from mothers with HCV to their infants before or during birth occurs less than 5% of the time. Whether or not transmission occurs may depend on the presence of high levels of the virus in the mother's blood; mothers coinfected with HBV or HIV are more likely to transmit HCV to their babies. Some studies have shown that HCV is present in breast milk, but transmission through breast feeding is believed to be extremely rare.
The transmission route for up 10% individuals infected with HCV cannot be identified. HCV is not transmitted by casual contact such as sneezing, coughing, hugging, or sharing eating utensils and drinking glasses.
Do not share needles or any other drug paraphernalia, razors, toothbrushes, clippers, nail files, or any items that contain blood. Make sure that instruments used for tattooing, body piercing, and acupuncture are properly sterilized; most practitioners today use disposable needles. All cuts and wounds should be covered. Although sexual transmission appears to be rare, you can reduce the risk by practicing safer sex, including the use of condoms and barriers. According to the Centers for Disease Control and Prevention (CDC), if you are in a monogamous relationship you do not need to change your current sexual practices, although partners should discuss safer sex options if either partner is concerned about transmission. If the woman has HCV, avoid sex during monthly periods. Proper dental hygiene can prevent bleeding gums, another possible transmission route. Notify your doctor, dentist, and other healthcare professionals if you have HCV. Healthcare workers should observe standard universal precautions when dealing with blood. If you are a woman with HCV, talk to your doctor if you are thinking about becoming pregnant.
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Section III: HCV Disease Progression
After exposure to the virus, the incubation period usually lasts 2-26 weeks. The initial phase of HCV disease is called acute infection. Acute HCV usually resolves after 2-12 weeks. However, up to 80-85% of people initially 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 (steatosis), liver scarring (cirrhosis), and liver cancer. In severe cases, a person may require a liver transplant.
Cirrhosis is a process in which liver cells are damaged or killed and replaced with scar tissue. Extensive scar tissue formation prevents the flow of blood through the liver, causing more liver cell death and a loss of liver function.
Compensated cirrhosis means that the liver is heavily scarred but can still function normally; people with compensated cirrhosis exhibit few or no symptoms.
Decompensated cirrhosis means that the liver is extensively scarred and unable to function. People with decompensated cirrhosis often develop complications such as varices (stretched and weakened blood vessels) in the esophagus (swallowing tube) and stomach, internal bleeding, ascites (fluid accumulation), and other potentially life-threatening conditions. They may also experience reversible mental confusion.
Liver cancer usually develops at later stages of HCV infection, typically after 25-30 years. The type of liver cancer associated with HCV is called primary hepatocellular carcinoma (HCC).
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Section IV: Symptoms of HCV
Many people report few or no initial 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 symptoms, including nausea, fatigue, fever, headaches, loss of appetite, abdominal pain, and muscle or joint pain. Some individuals report more severe flu-like symptoms, as well as jaundice (yellowing of the skin and whites of the eyes) and/or dark urine. 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 possibly related conditions.
Symptoms Reported by People with HCV
|Acute Hepatitis C
|Fatigue (mild to severe)
|Loss of appetite (anorexia)
|Muscle or joint pain
|Chronic Hepatitis C
|Fatigue (mild to severe)
|Loss of appetite (anorexia)
|Muscle or joint pain
|Late-Stage Hepatitis C with Cirrhosis
|Fatigue (mild to severe)
|Loss of appetite (anorexia)
|Muscle or joint pain
|Lack of concentration
|Peripheral vision problems
Conditions Linked to HCV
A number of different conditions have been associated with HCV. Some of these are autoimmune conditions, in which the immune system attacks the body's own tissues. Conditions sometimes seen in people with chronic HCV include Sjogren's syndrome (characterized by dry eyes and dry mouth), kidney conditions such as glomerulonephritis, heart and circulatory problems such as thrombosis, and skin conditions such as lichen planus (characterized by white plaques) and porphyria cutanea tarda (characterized by a sun-sensitive rash). Other related conditions include certain types of arthritis (joint inflammation), arthralgia (joint pain), thyroid disease, vasculitis (blood vessel damage), cryoglobulinemia (high levels of a blood protein that settles in the kidneys, skin, and nerve endings). Most serious conditions are associated with late-stage HCV disease, in which the liver is damaged and not able to function properly. Many people with HCV never experience any of these conditions. Check with your doctor if you experience any unusual symptoms.
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Section V: Diagnosing HCV
Testing 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 as well as the state of disease progression.
HCV Antibody Tests
- ELISA II is a simple blood test that can detect HCV antibodies.
- RIBA is a second antibody test that may be performed after an ELISA II test to confirm antibody positivity.
Viral Load Tests
Viral load tests measure the amount of HCV circulating in the blood. The HCV viral load is expressed in either copies per milliliter of blood or in a standard unit of measurement called International Units. There are three different types of viral load tests-HCV RNA PCR assay, RNA branched-chain DNA (bDNA) assay and the transcription mediated amplification or TMA assay. The HCV RNA branched-chain DNA (bDNA) assay is the least expensive but also the least sensitive. Viral load tests are used to confirm active infection, as a predictor of medical treatment response and, during medical treatment, to measure how well your medication is working against the virus. An association between viral load and disease progression has not been established.
Genotype tests are used to determine which type(s) of HCV you have. This information is useful for making treatment decisions such as which medications to use and how long treatment should last.
Liver Enzyme/ Function Tests
Liver enzyme/function tests measures certain functions of the liver. The most common measurements are alanine aminotransferase (ALT, formerly known as SGPT) and aspartate aminotransferase (AST, formerly known as SGOT). ALT and AST are enzymes that are released into the blood when the liver is damaged. They are often elevated in people with chronic HCV infection. Many people with HCV have mild to moderate elevations of these two enzymes, which are often the first indication that they have HCV. Other measurements include alkaline phosphatase (ALK) and gamma-glutamyl transpeptidase (GGT) levels. Abnormal levels may indicate cirrhosis and/or bile duct blockage, as well as other abnormalities. In addition, your doctor may measure prothrombin time (an indication of blood clotting speed) and bilirubin levels. Bilirubin is a pigment that is often present in the blood of people with liver inflammation; high bilirubin levels result in jaundice. Many factors such as use of medications and alcohol may cause abnormal lab results. Before drawing your own conclusions, check with a healthcare practitioner.
Liver biopsies are done to measure the severity of inflammation, the amount of scarring, and the general health of the liver. They may also be used to help determine appropriate treatment. The most common procedure is to numb the skin and muscle and then quickly insert a long, thin needle into the liver to draw out a specimen. Many people fear this procedure, but complications are rare. If you are anxious, ask your physician for a mild tranquilizer prior to your biopsy and for pain medication afterwards.
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Section VI: HCV Treatment Options
Until 1998, interferon alone (monotherapy) was the only approved treatment for HCV infection. Today, the standard therapy is a combination of pegylated interferon plus ribavirin. Research is ongoing to develop new and better medications, including helicase inhibitors, protease inhibitors and anti-fibrotic medications.
There are also several alternative and complementary treatments
that people have used to treat HCV infection, for example
milk thistle (silymarin) and licorice root (glycyrrhizin).
Some of these have been tested using Western-style clinical
trials. Herbal and other alternative therapies are discussed
in a separate brochure from the Hepatitis C Support Project
Approved Pharmaceutical Treatments for HCV
Interferon, ribavirin and pegylated interferon are the only FDA approved medications for treating hepatitis C. Interferon (by injection) is a genetically engineered product based on a set of natural immune system proteins found in the body. Pegylated interferons (PEG) are long-acting interferons that are injected once a week. They maintain a more constant level of interferon in the blood and better reduce the ability of HCV to replicate. Ribavirin is an oral antiviral medication used in combination with interferon to treat HCV infection. Ribavirin alone is not effective against HCV.
Ribavirin warning: Ribavirin has been shown to cause birth defects and miscarriages. Women of childbearing age and female partners of male patients who are taking ribavirin must use at least two reliable forms of effective contraception during treatment and during the six-month posttreatment follow-up period.
Standard Interferon Monotherapy
Currently marketed brands include Intron A (Schering-Plough Corporation), Infergen (InterMune, Inc.), Roferon A (Roche), Wellferon (Glaxo), and Alferon N (ISI Pharmaceuticals). The standard protocol for interferon administration is to be injected three times per week for at least one year. It is estimated that only 10-20% of individuals treated with standard interferon alone are able to permanently clear the virus to undetectable levels.
Interferon and Ribavirin
Rebetron is a combination of Intron A, a branded standard interferon plus ribavirin sold by Schering-Plough. Studies have shown that the combination works better than interferon alone. The protocol for Rebetron administration is three million units of interferon injected three times per week plus 800-1,200 mg of ribavirin taken daily. Studies suggest that the length of treatment depends upon genotype: 48 weeks of treatment for genotype 1 and 24 weeks for genotypes 2 or 3. In clinical trials, the average sustained virological response rates (SVR) are approximately 28% for genotype 1 and 66% for genotypes 2 and 3.
Pegylated Interferon MonotherapyPeg-Intron
PEG-Intron is Schering's brand of pegylated interferon. It comes in a powdered form that requires mixing with a liquid solution (reconstituting) before injection and needs to be dosed by body weight. The response rates for Peg-Intron monotherapy are 14% for genotype 1 and 47% for genotype 2 and 3.
Pegasys is Roche's brand of pegylated interferon. The standard dose is 180 µg for all patients and comes in a ready-made solution that does not require reconstitution. The response rates for Pegasys monotherapy is 28% for genotype 1 and 56% for genotype 2 and 3. Pegasys is also indicated for treatment of people with compensated cirrhosis.
Standard of Care - Pegylated Interferon and Ribavirin
The combination of pegylated interferon and ribavirin is now considered the standard of care for treating hepatitis C. There are currently two different pegylated interferon and ribavirin combinations that have been approved by the FDA - Schering's Peg-Intron (pegylated interferon alpha 2b) and Rebetol (ribavirin), and Roche's Pegasys (pegylated interferon alpha 2a) and Copegus (ribavirin).
Schering's Peg-Intron plus Rebetol
Peg-Intron plus Rebetol combination therapy has produced sustained virological response rates of 42% for genotype 1 (30% for patients with high viral load) and 82% for genotypes 2 and 3. Treatment duration for all genotypes is 12 months.
Pegasys plus Copegus
Pegasys plus Copegus combination treatment has produced sustained virological response rates of 46-51% for genotype 1 (41-46% for patients with high viral load) and 76-78% for genotypes 2 and 3. Treatment duration is 12 months for genotypes 1 and 4, and six months for genotype 2 and 3.
Measuring Treatment Response
Patients should be tested on a regular basis to monitor side effects and to make sure that they are responding to therapy. If a person has not responded after three months of treatment, further therapy is unlikely to clear the virus; many physicians recommend stopping the medication at this time. However, some evidence suggests that interferon can decrease scarring and inflammation and improve the health of your liver even if it does not clear the virus.
Investigational Pharmaceutical Therapies
HCV therapy has seen impressive advances given that the virus was only identified just over a decade ago. However, current treatment options can have many undesired side effects and treatment success cannot be achieved in everyone. Much research is underway to develop new and better HCV treatment options without the serious side effects of current medications.
Researchers are studying new forms of ribavirin that may be more effective and less toxic in the body. Levovirin and viramidine are two ribavirin-like drugs in development. In animal studies they appear to have fewer side effects because they target the liver and have less detrimental effects on red blood cells.
Amantadine (Symmetrel), an antiviral medication used to treat influenza A, has been studied in combination with interferon and ribavirin. Unfortunately, the studies conducted to date have been disappointing.
More promising medications in clinical trials include histamine dihydrochloride (Ceplene), and a synthetic version of thymosin-alpha-1 (Zadaxin), a hormone that stimulates T-cells and natural killer cells and appears to show promise when used in combination with interferon.
HCV helicase inhibitors, HCV protease inhibitors, and RNA-dependent RNA HCV genome polymerase inhibitors that would potentially block HCV viral replication are currently under study and look promising. Recently, BILN 206, a novel HCV serine protease inhibitor, completed Phase I clinical trials and was shown to be a safe and effective HCV antiviral agent.
There is currently no vaccine for hepatitis C, as there are for hepatitis A and B. HCV vaccines will be difficult to develop due to the virus' different genotypes and its ability to change or mutate during infection. Some progress is being made, but an effective HCV vaccine is not expected for 5-10 years.
The process of testing a new drug involves establishing its tolerability (Phase I trials), determining its safety and effectiveness (Phase II trials), and comparing it to current standard treatments (Phase III trials). After the FDA grants approval and the new drug is marketed, ongoing studies are done to refine the treatment for maximum safety and efficacy (Phase IV, or post-marketing trials). Clinical trials can be an excellent way to obtain free mediation; some trials may also pick up some or all of the costs of physician visits and lab tests. However, if you enroll in a clinical trial you may not be chosen to receive the new drug or the most effective dosage. Additionally, you should read all clinical trial information and make sure that you fully understand the terms and conditions of the trials.
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Section VII: Treatment Considerations
Predicting Response to HCV Treatment
Treatment with interferon or interferon plus ribavirin is more likely to clear HCV if a person has a genotype other than 1, a low HCV viral load (less than two million copies), has been infected with HCV for a shorter time, has mild to moderate disease, is female, and is of a younger age. After twelve weeks of antiviral treatment, a 2-log drop in viral load or elimination of virus predicts a successful response at the end of treatment. These guidelines may be used to help tailor treatment or to stop treatment that is not working. However, these are guidelines only. Some doctors believe that therapy should be continued because some people still respond to therapy or experience improved liver health even if viral load does not decrease by the suggested amount.
Managing Drug Side Effects
The most prevalent side effects of interferon/ribavirin include flu-like symptoms, muscle and joint pain, nausea, headaches, fatigue, loss of appetite, dry skin, anxiety, and depression. Some physical symptoms may be reduced with ibuprofen or acetaminophen in low doses (2 grams per day or less). High doses of acetaminophen can be toxic to the liver. People experiencing anxiety, irritability, or depression may be helped with mild tranquilizers and/or anti-depressants. Check with your doctor before taking any of these medications. If you inject your interferon just prior to bedtime, you may be able to sleep through the worst of the side effects. Drinking as much water as possible may help reduce the severity of side effects. Eating small, frequent meals instead of large, infrequent ones may lessen gastrointestinal problems. Regular exercise may also help alleviate some side effects, such as fatigue, associated with interferon therapy. Daily moisturizing will help prevent dry skin. Vary where you inject to prevent skin inflammation or a rash at injection sites. For some people, physical side effects are worse when the drug is started and may diminish over time.
The most common reason for stopping antiviral therapy with ribavirin is anemia (low red blood cell count) and thrombocytopenia (low platelet count). Erythropoietin (Procrit) may help control anemia. Interleukin 11 (Neumega) is FDA-approved for treating thrombocytopenia in patients undergoing chemotherapy. In ongoing clinical trials, it appears to benefit patients prior to and during HCV antiviral therapy. A very low platelet count may indicate that you have cirrhosis, and care should be taken during treatment.
Some people may develop thyroid dysfunction while on treatment with interferon. Thyroid function should be closely monitored prior to starting treatment and then every three months during therapy. In most people, thyroid function returns to normal once therapy is discontinued, but some people may develop irreversible thyroid problems that will require continuous medication.
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Section VIII: HCV Management
HCV is a difficult disease to manage due to the lack of good conventional treatment options. However, lifestyle plays an integral part in HCV disease management and treatment. Proper diet, exercise, and stress management 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 them about their knowledge of 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 recommendations. Once your HCV diagnosis has been confirmed, your family doctor or general practitioner should send you to a specialist. Generally, you will be referred to a gastroenterologist (a digestive disease specialist) or a hepatologist (a liver disease specialist).
HAV and HBV Vaccination
It is strongly recommended that people with HCV get vaccinated against HAV and HBV if they are not already immune. Severe HAV and HBV infections have been reported in people coinfected with HCV. The hepatitis A vaccine consists of two doses within a six-month period, and the hepatitis B vaccine requires three doses within a six-month period. Both vaccines are made from killed viruses and are considered safe and effective. A combination HAV/HBV vaccine was approved by the FDA in May 2001.
Since the liver converts and detoxifies everything you eat and drink, a healthy, well-balanced diet is essential. A diet that follows the general guidelines for nutritional health based on the Food Guide Pyramid is generally recommended. Such a diet is low in fat and sodium, high in complex carbohydrates, and has adequate protein.
In the past, diet modification was seen as an important part of HCV management. This is less true today. However, avoiding certain foods may reduce the processing and detoxification work your liver must do, and may improve the overall health of your liver. Processed foods often contain chemical additives, so reduce your consumption of canned, frozen, and other preserved foods. Eating organic fruits and vegetables can help you avoid the pesticides and fertilizers used to grow non-organic produce. Read all labels to acquaint yourself with ingredients.
Protein derived from poultry, fish, and vegetable sources may be most beneficial. Some doctors recommend that people with any type of liver disease should not eat raw or undercooked shellfish (even if they are immune to hepatitis A). It is often recommended that people with HCV should avoid foods high in fat, salt, or sugar. Caffeine is a chemical that must be processed by the liver, and it is recommended that you limit your caffeine intake by reducing your consumption of coffee, tea, and soda. Because chocolate has a high fat (and in some types, caffeine) content, eat it in moderation. Some people with HCV cannot tolerate dairy products. If this is the case for you, you may wish to use nondairy substitutes such as soy milk or rice milk.
A well-balanced diet should contain all the essential vitamins and minerals you need, but some individuals also take vitamin supplements. Taking mega vitamin supplements may be harmful. Avoid taking high doses of vitamins A and D; vitamin A can be very toxic to the liver. If you need a vitamin and mineral supplement, choose a low-dose supplement without iron.
People with HCV should consult a licensed nutritionist or dietitian for specific dietary recommendations. Do not undertake any unconventional diet without consulting a medical practitioner. In addition, be sure to inform your doctor about any vitamins and minerals you are taking.
Everything you breathe or absorb through the skin must be filtered by the liver. Fumes from paint thinners, pesticides, and aerosol sprays can damage your liver and should be avoided.
Alcohol and Drugs
Many studies have shown that heavy consumption of alcohol can severely accelerate HCV disease progression. In fact, one study showed that 58% of a group of heavy drinkers (more than five drinks per day) with HCV progressed to cirrhosis, compared to only 10% of a non-drinking group with HCV. It is not yet known if light or moderate alcohol consumption is harmful to the liver, but most experts recommend that people with HCV should avoid alcohol.
Many drugs (whether prescription, over-the-counter, or recreational) must be processed by the liver. People with HCV should avoid recreational drugs and smoking cigarettes. Check with your doctor before taking over-the-counter or prescription drugs. Certain herbal remedies have also been shown to damage the liver.
Controlling stress is a major factor in managing HCV disease. Living with a chronic disease is stressful. Many people report 'flare-ups' (periods of increased symptoms) following episodes of stress. Exercise, meditation, and time management can all help reduce stress. Try to maintain a realistic picture of your health and a positive attitude. Understanding the severity of your liver disease is an important part of having a realistic picture of your condition.
Fatigue and low energy levels are common in people with HCV. Learn your limits and do not overextend yourself. When you plan activities, allow time in between for relaxation or naps. Remember that your health is important - learn to say 'no' to friends and family who have unrealistic expectations of your energy level.
Plan activities well in advance and try to make realistic work and play schedules. Use a daily planner to help with planning and remembering activities. Consult your planner regularly when making appointments and scheduling daily tasks. Don't forget to plan restful activities.
Meditation can be a useful tool in managing and living with HCV or any chronic illness. It is simple and easy to learn. Meditation can reduce stress and can help you maintain a healthy outlook towards life.
Moderate exercise is highly recommended for all individuals who are not in an acute phase of HCV. Exercise can help reduce stress and is important for maintaining good health. However, too much exercise can leads to 'flare-ups.' Participate in low impact types of exercise such as walking and swimming. Slowly increase your activities until the desired level is achieved. Always check with your doctor before starting any exercise program.
HCV Support Groups
Many people with HCV feel isolated and find it difficult to cope with the effects of living with a chronic illness. A support group can offer a safe space to discuss the emotional issues surrounding HCV. Furthermore, the information shared by peer members can be helpful in making decisions about a wide variety of issues facing people with HCV. It is highly recommended that you join a support group while undergoing HCV treatment. Support group information can be obtained by contacting the organizations listed at the end of this booklet, or you can click here and access our online support group database.
The Internet contains a wealth of information, both good and bad. Always check the sources of the information you find. Look for dates and references. Challenge any information you believe is in error. Be skeptical of Web sites that contain the word 'cure' or other misleading information. Remember that not all the information you find on the Internet is correct. Talk to your doctor regarding any information about which you are concerned. Common sense can take you a long way! Visit our Web site at www.hcvadvocate.org for recommended sites.
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Section IX: Conclusion
Chronic HCV is a liver disease that can have serious consequences. It is important to remember that many people do not experience symptoms or disease progression. Those who do eventually experience disease progression may remain symptom-free for decades. However, some patients develop serious liver disease that can result in liver failure or death. New treatments for HCV are currently being tested, and it is believed that better treatment options will be available within five years. Additionally, lifestyle changes such as good nutrition, exercise, and stress management can help alleviate or halt disease progression.
We hope this information has helped you to understand the hepatitis C virus and how it can affect your physical and emotional health. We welcome any suggestions or ideas for improving this booklet.
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Section X: Glossary
ACUTE: a rapid-onset, short-term initial stage of a disease. Contrast with chronic.
ACUTE HEPATITIS: the initial stage of viral hepatitis following infection. In HCV, acute hepatitis refers to the first six months of infection.
ALOPECIA: hair loss
ANEMIA: reduced number of red blood cells or reduced ability of blood to carry oxygen. There are several types of anemia, all with different causes. Symptoms may include fatigue, weakness, pale skin, and difficulty breathing.
ANTIBODY: a protein produced by the immune system when a foreign substance enters the body. The presence of antibodies is an indicator of a past or possibly current infection. HCV antibodies are written as anti-HCV. The test for anti-HCV must be followed by other laboratory tests in order to confirm the diagnosis. The antibody test alone is not sufficient to make a diagnosis of chronic HCV infection.
ARTHRALGIA: joint pain
AST: abbreviation for alanine aminotransferase. ALT is an enzyme produced inside liver cells. It is frequently elevated in people with chronic HCV infection because of a breakdown of the membranes of liver cells due to inflammation. Serum ALT levels are measured using a common blood test.
AUTOIMMUNE RESPONSE (AUTOIMMUNITY): a condition in which a person's immune system produces antibodies that attack the body's own tissues. Several conditions associated with advanced hepatitis C appear to have an autoimmune aspect.
BID: taken twice a day
BILIRUBIN: a yellowish pigment released when red blood cells are broken down. Normally bilirubin is processed and excreted by the liver. An excess level of bilirubin in the blood (hyperbilirubinemia) indicates liver damage, and can lead to jaundice (yellowing of the skin and whites of the eyes), pale-colored stools, and dark urine.
BIOCHEMICAL RESPONSE: how a person's serum ALT responds to treatment. When a patient's elevated serum ALT level becomes normal after HCV therapy has been initiated, this is considered a biochemical response.
BIOPSY: a procedure in which a sample of cells or tissue is taken for examination in a laboratory. In HCV, liver biopsies are used to monitor the health of the live
BLOODBORNE: a pathogen that is transmitted through direct blood-to-blood contact; for example, through sharing dirty needles and through blood transfusions.
BRAIN FOG: mental confusion, memory loss, and/or lack of alertness. Not to be confused with encephalopathy.
BREAKTHROUGH: the return of detectable viral load in a person who had previously achieved a virological treatment response.
CHRONIC: a long-term or persistent disease. Contrast with acute.
CHRONIC ACTIVE HEPATITIS: a condition in which HCV continues to replicate and infect new cells after six months.
CIRRHOSIS: a type of liver damage in which normal liver cells are replaced with scar tissue. In compensated cirrhosis, the liver is damaged but can still function. In decompensated cirrhosis, liver function is severely impaired and scar tissue interferes with normal blood flow through the liver, potentially leading to bleeding varices, ascites, and other symptoms.
CYTOPENIA: low levels of blood cells.
EDEMA: swelling caused by the accumulation of fluid in body tissues.
EFFICACY: effectiveness; the ability to achieve a desired effect.
END OF TREATMENT (EOT) RESPONSE: the disappearance of detectable HCV RNA from the blood at the end of a course of treatment.
EXTRAHEPATIC: outside the liver
FDA: abbreviation for the Food and Drug Administration. The U.S. federal government agency has many functions, including the responsibility for granting or denying approval for drugs to be sold to the public.
FIBROSIS (Adjective FIBROTIC): liver damage that involves the development of fibrous scar tissue.
FLARE-UP: a sudden worsening of disease symptoms.
FULMINANT HEPATITIS: a severe, life-threatening form of hepatitis.
GENOTYPE: genetic variation in the structure of HCV. There are six major genotypes, designated by the numbers 1 through 6. There are also many subtypes, e.g., 1a, 2a, etc. In the U.S., genotype 1 is predominant (approximately 70-75% of patients).
HCV RNA: the genetic material of the hepatitis C virus. HCV is a single-stranded ribonucleic acid (RNA) virus.
HEPATIC: relating to the liver.
HEPATITIS: inflammation of the liver. Hepatitis may have various causes, including viruses, toxins, and heavy alcohol consumption.
HEPATOCELLULAR CARCINOMA (HCC): a type of primary liver cancer seen in some people with long-term liver damage due to chronic hepatitis C or hepatitis B.
HEPATOLOGY (also HEPATOLOGIST): the medical specialty that deals with the liver; a hepatologist treats liver disease.
HEPATOTOXICITY: toxic or poisonous to the liver.
HISTOLOGICAL: refers to bodily tissue. In HCV, histological improvement means improvement in liver tissue, either reduced inflammation or reduced fibrosis, when comparing pretreatment biopsies with biopsies typically six months after HCV therapy.
INCUBATION PERIOD: the period of time between initial exposure to an infectious microorganism and the development of disease symptoms.
INTERFERON: a naturally occurring protein in the human body produced by the immune system. Interferon interferes with viral replication. Genetically engineered products based on the natural protein have been developed by several pharmaceutical companies, and are approved for the treatment of chronic HCV infection.
JAUNDICE: yellowing of the skin and whites of the eyes due to high bilirubin levels in the blood. Jaundice is often a sign of liver damage or gallbladder disease.
LIVER: a large organ on the upper right side of the abdomen that plays an important role in the metabolism of sugars and fats, synthesizes several proteins, and filters toxins from the blood.
MALAISE: a generalized feeling of illness and discomfort; a flu-like feeling.
MYALGIA: muscle pain.
NEUTROPENIA: an abnormally low number of neutrophils, resulting in increased susceptibility to infection.
NEUTROPHIL: the most common type of immune system white blood cell. Neutrophils are phagocytes that engulf and destroy invading organisms such as bacterial and fungi.
NON-NUCLEOSIDE REVERSE TRANSCRIPTASE INHIBITOR (NNRTI): an antiviral drug that suppresses viral replication by interfering with the action of the reverse transcriptase enzyme. Ribavirin is an NNRTI.
NONRESPONDER: a person who does not show sufficient improvement while undergoing treatment. In HCV, a nonresponder is a person who does not experience a disappearance of HCV RNA.
PEGYLATED INTEFERON (PEG-INTRON, PEGASYS): a form of interferon that has a long half-life in the body and can be injected less often (typically once per week). Pegylated interferon is approved for the treatment of HCV.
PERCUTANEOUS: through the skin.
PERINATAL TRANSMISSION (VERTICAL TRANSMISSION): transmission from a mother to a fetus or newborn. Vertical transmission may occur in utero (in the womb), intrapartum (during birth) or postpartum(e.g., via breast-feeding).
PLATELET: see thrombocyte.
PRURITUS (adjective PRURITIC): itchiness.
QUALITATIVE: relating to, or expressed in terms of, quality. A qualitative viral load test measures the presence of a virus.
QUANTITATIVE: relating to, or expressed in terms of, quantity. A quantitative viral load tests measures the amount of viral genetic material.
QUASISPECIES: individual genetic variants of HCV. Within a single genotype there may be multiple quasispecies.
RELAPSE: recurrence of disease symptoms following a period of improvement. In HCV, relapse can refer to an increase in viral load after it has been suppressed by antiviral treatment.
RESPONSE TO TREATMENT: how a disease responds to drug therapy. The term can refer to a biological, histological, or virological response.
RESPONDER-RELAPSER (or RELAPSER): a person who initially responds well to a treatment but then experiences a relapse. In chronic HCV infection, this is someone who initially has a positive response to treatment (normal ALT and loss of HCV RNA), but does not sustain that response when therapy is stopped.
RIBAVIRIN (REBETOL, COPEGUS): an antiviral medication that is used in combination with interferon for treatment of chronic HCV infection.
STEATOSIS: buildup of fat in the liver.
SUBCUTANEOUS (SQ): underneath the skin; usually refers to a drug injected under the skin.
SUSTAINED RESPONSER (SVR): a person who maintains a long-term response to treatment. In HCV, a sustained responder has a long-term beneficial result of HCV treatment (usual endpoints are normal ALT and negative HCV RNA) that persists after treatment has been stopped (six months is the generally accepted time interval).
THROMBOCYTE (PLATELET): a type of blood cell responsible for normal blood clotting.
THROMBOCYTOPENIA: an abnormally low number of platelets, which may result in abnormal bleeding and bruising.
TREATMENT-NAÏVE: a person who has not had prior treatment for a particular condition.
VIRAL LOAD: the amount of virus (i.e., the HCV RNA level) that can be measured, usually in the blood.
VIRAL REPLICATION: the ability of a virus to reproduce copies of itself.
VIROLOGICAL RESPONSE: how a person's viral load responds to treatment. In HCV, when a patient's HCV RNA becomes undetectable after HCV therapy has been initiated, this is considered virological response. If the HCV RNA remains negative beyond six months, the term sustained virological response is used.
VIRUS: a microscopic infectious particle that invades a living organism and makes copies of itself (viral replication).
WINDOW PERIOD: the time between exposure to a microorganism and the production of sufficient antibodies to be detected in a test.
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Section XI Resources
For more information about HCV, contact the following organizations:Hepatitis Foundation International: 1-800-891-0707,
American Liver Foundation: 1-800-223-0179,
Hep C Connection: 1-800-522-4372,
Hepatitis C Self-Help Book, by Misha Cohen, OMD LAC and Robert Gish, MD (sold through our Web site at www.hcvadvocate.org).
Living with Hepatitis C: A Survivor's Guide, by Gregory T. Everson, MD and Hedy Weinberg. Hatherleigh Press, 1-800-367-2550.
Hepatitis C: A Personal Guide to Good Health, by Beth Petro Roybal, MA Ulysses Press, 1-800-377-2542.
The First Year - Hepatitis C; An Essential Guide for the Newly Diagnosed, by Cara Bruce and Lisa Montanartelli. Marlow and Co.
Roche Patient Assistance Program - Pegassist
Schering-Plough Commitment to Care
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