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A Guide to Understanding Hepati...

A Guide to Understanding Hepatitis C (2006)

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.

Alan Franciscus
Liz Highleyman

Managing Editor / Webmaster
C.D. Mazoff, PhD

Permission to reprint this document is granted and encouraged with credit to the Hepatitis C Support Project www.hcvadvocate.org


<font>Table of Contents</font>

1.      Introduction: HCV

2.      HCV Transmission and Prevention

3.      HCV Disease Progression

4.      Symptoms of HCV

5.      Diagnosing HCV

6.      HCV Treatment Options

7.      HCV Treatment Considerations

8.      HCV Management

9.      Conclusion

10.  Glossary

11.  Resources

Section I: Introduction: HCV

is a blood-borne virus that was previously referred to as non-A/ non-B hepatitis. HCV has six major genotypes, numbered 1–6. Genotype 1, which is the most common in the U.S., is the most 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. Up to 80% 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 (scarring), and liver cancer. Today, HCV is the leading reason for liver transplants in the U.S. There is currently no vaccine or cure for HCV, but various treatments can eradicate the virus and/or help slow or stop disease progression for some people.

HCV Facts

  • 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 in the U.S.
  • Individuals with HCV should avoid drinking alcohol and using recreational drugs.
  • Individuals with HCV should be vaccinated against hepatitis A and hepatitis B.

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 functions. It pro-cesses 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. Liver cells produce bile, which helps the body digest food and absorb nutrients. The liver detoxifies substances 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 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 Transmission

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 0.01%. A small percentage of people (estimated at 1–3% for monogamous heterosexuals) may contract HCV through unprotected sexual activity. Among people in so-called “high risk” groups (gay men, prostitutes, people with multiple sex partners, people with STDs), sexual transmission appears to be somewhat more common.

Healthcare workers are at risk for HCV infection because of needlestick accidents and unavoidable situations that 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 HCV in the mother’s blood; mothers co-infected 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 breast-feeding is believed to be safe.

The transmission route for up to 10% of 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.

HCV Prevention

Do not share needles or any other drug paraphernalia, razors, toothbrushes, clippers, nail files, or any items that may come in contact with 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 stable, long-term 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 a 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 HCV, the window period usually lasts 2–26 weeks. The initial phase of hepatitis C is called acute infection. Acute HCV usually resolves after 2–12 weeks. However, up to 80% 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 impairs 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 perform most functions; 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 high blood pressure in the vein that leads to the liver (portal hypertension), 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 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. 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.

Symptoms Reported by People with HCV

Acute Hepatitis C

Flu-like illness

Abdominal bloating


Fatigue (mild to severe)

Abdominal pain


Loss of appetite (anorexia)


Night sweats




Muscle or joint pain




Chronic Hepatitis C

Fatigue (mild to severe)

"Brain fog"

Mood swings

Loss of appetite (anorexia)



Muscle or joint pain

Abdominal pain






Late-Stage Hepatitis C with Cirrhosis

Fatigue (mild to severe)



Loss of appetite (anorexia)


Frequent urination




Muscle or joint pain

Abdominal pain

Abdominal bloating


Mood swings

Cognitive dysfunction

Lack of concentration

Mental confusion


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 Sjögren’s syndrome (characterized by dry eyes and dry mouth), kidney conditions such as glomerulonephritis, and skin conditions such as lichen planus (characterized by white lesions or bumps) 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), and 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, when 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 and the state of disease progression.


HCV Antibody Tests

is a simple blood test that can detect HCV antibodies.


is a second antibody test that may be performed after an ELISA test to confirm the presence of HCV antibodies. This test is usually only performed in people who test positive by the HCV Elisa but do not have known risk factors for acquiring HCV.


Viral Load Tests

Viral load tests measure the amount of HCV circulating in the blood. HCV viral load is expressed as either copies per milliliter of blood or as a standard unit of measurement called International Units. There are three different types of viral load test: HCV RNA PCR, branched-chain DNA (bDNA), and transcription mediated amplification, or TMA. The bDNA assay is the least expensive, but also the least sensitive. Viral load tests are used to confirm active HCV infection, to predict medical treatment re-sponse, and to measure how well the medications are working against the virus during treatment. An association between viral load and disease progression has not been established.


Genotype Tests

Genotype tests are used to determine what type(s) of HCV you have. This information is useful for making treatment decisions, such as how much medication to use, how long treatment should last, and the likelihood of responding to treatment.


Liver Biochemical/Function Tests

There are various blood tests used to assess how well your liver is working. The liver (hepatic) panel includes measurements that indicate liver function. 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 HCV infection. Many people with HCV have mild to moderate elevations of these two enzymes, which are often the first indication that they are infected. Other measurements include alkaline phosphatase (ALK) and gamma-glutamyl transpeptidase (GGT). Abnormal levels may indicate cirrhosis 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 provider.


Liver Biopsies

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 if treatment is needed. 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.

Section VI: HCV Treatment Options

Until 1998, interferon alone (monotherapy) was the only approved treatment for HCV infection. Today, the standard of care for treating HCV is the combination of pegylated interferon plus ribavirin. Research is ongoing to develop new and better medications, including polymerase inhibitors, protease inhibitors, and antifibrotic 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). Herbal and other alternative therapies are discussed in a fact sheet from the Hepatitis C Support Project (click here to download).

Approved Pharmaceutical Treatments for HCV

Standard interferon, pegylated interferon, and ribavirin are the only FDA-approved medications for treating hepatitis C. Interferon, given by injection, is a genetically engineered product based on a set of natural immune system proteins found in the body. Pegylated interferon (PEG) is a long-acting form of interferon that can be injected once a week. PEG maintains a more constant level of interferon in the blood and better reduces 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.


The Standard of care: Pegylated Interferon plus Ribavirin


The combination of pegylated interferon plus ribavirin is now considered the standard of care for treating HCV. There are currently two different pegylated interferon/ribavirin combinations that have been approved by the FDA: Schering’s Peg-Intron plus Rebetol brand ribavirin, and Roche’s Pegasys plus Copegus brand ribavirin.


Schering’s Peg-Intron plus Rebetol
SVR for Peg-Intron plus Rebetol combination therapy is 41% for genotype 1, and 82% for genotypes 2 through 6. Peg-Intron is a reconstituted powder that is dosed according to a person's weight.


Roche’s Pegasys plus Copegus
SVR for Pegasys plus Copegus combination therapy is 44-51% for genotype 1, and 70-82% for genotypes 2 through 6. Pegasys is a ready-made solution that is dosed at 180µg regardless of a person's weight. The FDA has also approved Pegasys for treatment of chronic hepatitis B and Pegasys plus Copegus for the treatment of people with HIV and hepatitis C coinfection.


Treatment Duration and Medications

The standard duration for treatment of chronic hepatitis C is 48 weeks for genotype 1, and 24 weeks for genotypes 2 and 3. Pegylated interferon is given once a week as an injection right under the skin. The ribavirin dose is given at 1000/1200 mg/day (depending on a person's weight) for genotype 1 and 800 mg/day for genotypes 2 and 3. Ribavirin is taken orally twice a day with food (breakfast and dinner).


Measuring Treatment Response

People receiving HCV treatment should be tested on a regular basis to monitor side effects and to make sure that they are responding to therapy. If someone has not responded after three months of treatment, further therapy is unlikely to clear the virus. Many physicians recommend stopping the medications at this time. However, some evidence suggests that interferon can decrease scarring and inflammation and improve liver health even if it does not clear the virus.


Investigational Pharmaceutical Therapies

HCV therapy has seen impressive ad-vances, given that the virus was only identified in 1989. However, current treatment options can have many undesired side effects and treatment success may not always be achieved. There is much research underway to develop new and better HCV treatment options without some of the serious side effects of current HCV medications. It appears that combination therapy with two or more agents is more effective than monotherapy for treating HCV. For this reason, most new clinical trials will focus on testing the effectiveness of combining the new drugs with pegylated interferon.

HCV protease inhibitors, and HCV polymerase inhibitors, newer forms of interferon, anti-fibrotic and other medications are currently under study and look promising.

HCV Vaccines

There is currently no vaccine for HCV, as there are for HAV and HBV. 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.

Clinical Trials

The process of testing a new drug involves establishing its safety and tolerability (Phase I trials), measuring its effectiveness (Phase II trials), and comparing the new drug to current standard treatments (Phase III trials). After the FDA has granted approval and the new drug is marketed, ongoing studies are done to refine the treatment for maximum safety and effectiveness (Phase IV, or postmarketing trials).

Clinical trials can be an excellent way to obtain free medication; 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. You should read all clinical trial information and make sure that you fully understand the terms and conditions of the study, such as the withholding of viral load information from the participant.

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Section VII: Treatment Considerations

Predicting Response to HCV Treatment

Adherence to HCV therapy is an important factor in achieving the highest possible treatment response rates. Treatment with interferon plus ribavirin is more likely to clear HCV if a person has a genotype other than 1, a low HCV viral load, infection with HCV for a shorter time, mild to moderate disease, is female, has a healthy body weight and is of a younger age.

After 12 weeks of antiviral treatment, a 2-log drop in viral load or elimination of HCV 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, some doctors believe that therapy should be continued, because some people still respond to therapy or experience improved liver health even if their viral load does not become undetectable or decrease by the suggested amount.

Managing Drug Side Effects

The most common side effects of interferon and ribavirin include mild flu-like symptoms, muscle and joint pain, nausea, headaches, fatigue, loss of appetite, dry skin, anxiety, depression, and insomnia. 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 or anti-depressants. Check with your doctor before taking any of these medications.

The key to managing HCV treatment-related side effects is to treat them as soon as they occur. Always report any serious side effects to your medical provider as soon as possible before they become severe.

There are many simple tips to help alleviate some of the less serious side effects of treatment including:

• Take the pegylated interferon before bedtime; this allows most people to sleep through the worst of the side effects since the majority usually occur within 4-6 hours after the injection.
• Drink plenty of fluids (without caffeine or alcohol); this helps to relieve side effects. It is especially important to drink water or clear fruit juices (apple, cranberry, or grape) right before and right after self-injection.
• Some people take an over-the counter pain reliever one hour before their injection to help relieve side effects. Others may find that taking a pain reliever 2 to 3 hours after the injection works better to relieve the pain.
• Exercise is one of the most important components of health maintenance, and this remains true during therapy. Phy-sical activity helps you stay positive and focused and improves well-being. Mod-eration is the key to physical activity. Some good choices for exercise include stretching, walking, yoga, or any activity that you enjoy.

For some people, physical side effects are worse when the drug is started and may diminish over time.

The most common reason for stopping HCV therapy is anemia (low red blood cell count), thrombocytopenia (low platelet count), and neutropenia (low white blood cell count). Medica-tions used to control these conditions include erythropoietin (for anemia), and GM-CSF (granulocyte macrophage colony-stimulating factor) for low white blood cells. A low platelet count may indicate 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 can be a difficult disease to manage. 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 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 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 hepatitis A and B if they are not already immune. Severe HAV and HBV infections have been reported in people already infected 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 processes 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 new 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. How-ever, avoiding certain foods may reduce the processing and detoxification work the 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. Eat-ing organic fruits and vegetables can help you avoid the pesticides and fertilizers used to grow nonorganic produce. Read all labels to acquaint yourself with ingredients.

Protein derived from poultry, fish, and vegetable sources may be most beneficial. It is recommended 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 people also take vitamin supplements. Taking megavitamin 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 extra vitamins and/or minerals, 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.

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 with only 10% of a nondrinking 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 tobacco. Check with your doctor before taking over-the-counter or prescription medications. Certain herbal remedies have also been shown to damage the liver.

General Wellness

Stress management
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.

Managing fatigue
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 nap

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