Hepatitis C Disease – Progression and Management
After exposure to the hepatitis C virus, the window period before antibodies can be detected using a standard test usually lasts from 2 to 26 weeks. The initial phase of hepatitis C is called acute infection. Acute HCV infection may resolve with spontaneous viral clearance, typically within 2–12 weeks. However, up to 75% of people initially infected with HCV do not clear the virus from their bodies within six months and become chronically infected.
Most people with chronic hepatitis C 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. There are no tests or other methods to identify who will progress to serious disease progression, so it’s important that all people with chronic hepatitis C are monitored on a regular basis and discuss treatment options with their medical provider.
A liver biopsy is useful in measuring the extent of any liver damage. The findings of a liver biopsy can be used in combination with the estimated date of initial infection to make an educated guess as to the rate of HCV disease progression.
The Fibroscan is another test for measuring liver damage. It is a machine that works by sending radio waves through the liver to gauge the level of damage (if any) of the liver. This test is usually combined with other liver tests. Fibroscan is now replacing the liver biopsy. There are also various combinations of blood tests that are used to monitor the liver.
Chronic HCV infection can lead to the development of fibrous tissue in the liver (fibrosis and at later stages, cirrhosis), fat accumulation in the liver (steatosis), liver cancer, and end-stage liver failure. In severe cases, a person may require a liver transplant.
Fibrosis and cirrhosis occur when liver cells are damaged or killed and healthy liver tissue is replaced with fibrotic tissue. Extensive scar tissue can impair the flow of blood through the liver and cause blood to back up, leading to further loss of liver function and complications.
Compensated cirrhosis means that the liver is heavily scarred but still able to perform most of its vital functions; people with compensated cirrhosis may exhibit few symptoms, but need more careful monitoring.
Decompensated cirrhosis means that the liver is so extensively scarred that it is unable to function properly, leading to serious complications that can greatly affect overall health and bodily functions. People with decompensated cirrhosis often develop complications such as varices (stretched and weakened blood vessels) in the esophagus and stomach, internal bleeding, ascites (fluid accumulation in the abdominal cavity), and other potentially life-threatening conditions. Encephalopathy (reversible mental confusion) as toxins build up in the brain due to impaired filtering is another complication of decompensated cirrhosis.
Liver cancer can develop at later stages of HCV infection after a person has developed advanced fibrosis (stage 3) or cirrhosis.The type of liver cancer associated with HCV is called primary hepatocellular carcinoma (HCC).
Hepatitis C Facts
Acute hepatitis C is the initial infection—there are more than 30,500 acute infections every year in the United States
Acute hepatitis C infection lasts for six months
Chronic hepatitis C infection is defined as the hepatitis C virus being in the body for six months or longer
The Centers for Disease Control estimates that about 3.5 million Americans are living with hepatitis C
More than 19,000 Americans die from hepatitis C every year
Symptoms of Hepatitis C
Hepatitis C Disease Progression
Many people report few or no symptoms during the acute phase of hepatitis C infection, and the disease often progresses to the chronic stage without detection. Some people with acute hepatitis C, and many more with chronic infection experience flu-like symptoms including fatigue, nausea, fever, headaches, loss of appetite, abdominal pain, and muscle or joint pain. Many have elevated liver enzyme (ALT and AST) levels. Over time—years or even decades—people with chronic hepatitis C may develop various symptoms related to fibrosis, cirrhosis, or liver cancer. Chronic hepatitis C infection is also associated with a wide variety of related conditions.
Symptoms Reported by People with Hepatitis C
Acute Hepatitis C:
Most people (about 2 out of 3) during the acute stage of hepatitis C have few or no symptoms, but some people (about 1 out of 3) have the following symptoms.
• Flu-like illness
• Fatigue (mild-moderate-severe)
• Night sweats
• Loss of appetite (anorexia)
• Indigestion or heartburn
• Muscle or joint pain
• Abdominal pain and bloating
Chronic Hepatitis C:
People with hepatitis C typically have more of these symptoms the longer they are infected with hepatitis C.
• Fatigue (mild to severe)
• Loss of appetite (anorexia)
• Indigestion or heartburn
• Muscle or joint pain
• Abdominal pain
• Mood swings
• “Brain fog”
• Night sweats
Late-Stage Hepatitis with Cirrhosis:
• Fatigue (mild to severe)
• Loss of appetite (anorexia)
• Indigestion or heartburn
• Muscle or joint pain
• Abdominal pain
• Abdominal bloating
• Fluid retention (edema)
• Abdominal fluid accumulation (ascites)
• Frequent urination
• Bleeding varices
• Mood swings
• Cognitive dysfunction
• Lack of concentration
• Mental confusion
• Peripheral vision problems
• Poor sleep cycles
• Bleeding problems
• Moderate to severe pruritus (itching)
• Muscle wasting syndrome
Remember: Chronic hepatitis C just means that the virus in the body for longer than 6 months it does not necessarily mean that people will get sick and die. Careful monitoring is the key to staying healthy.
Conditions Linked to Hepatitis C
A number of different conditions have been associated with hepatitis C. 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 infection include cryoglobulinemia (high levels of a blood protein that settles in the kidneys, skin, and nerve endings), vasculitis (blood vessel damage), Sjögren’s syndrome (characterized by dry eyes and dry mouth), 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), and thyroid disease. Treating the underlying cause (hepatitis C infection) is the most common treatment strategy for many of these related conditions.
Some of the most serious conditions are associated with late-stage hepatitis C, when the liver is heavily damaged and not able to function properly. However, many people with hepatitis C never develop any of these conditions.
Check with your doctor if you experience these or any other unusual symptoms.
Self-Help Tips: Getting Organized
Getting organized and making sure you have all necessary documents and copies of tests will help you and your medical provider maximize a medical appointment. Keep track of the following tests:
HCV viral load (HCV RNA)
Results of recent ALT and AST tests
Recent complete blood count (CBC)
Liver biopsy report
Ultrasound and imaging reports
Any other medical records for other diseases or conditions
Monitoring Hepatitis C
Monitoring Hepatitis C
Screening for hepatitis C is not routinely done, so you may have to request a test from your medical provider. This usually involves an antibody test followed by a confirmatory HCV viral load test. Once hepatitis C is diagnosed, ongoing monitoring is needed to assess disease progression and the need for treatment. 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.
HCV Antibody Tests:
Antibody tests measure proteins produced by the immune system to fight specific invaders. After exposure to HCV, it may take up to 26 weeks (the “window period”) before antibodies can be detected using a standard test.
Viral Load Tests:
Viral load tests measure the amount of HCV RNA circulating in the blood. The presence of detectable genetic viral material indicates that the virus is actively replicating.
HCV viral load is expressed as International Units (IU/mL). There are three different types of viral load tests:
HCV RNA polymerase chain reaction (PCR),
branched-chained DNA (bDNA), and
transcription mediated amplification (TMA).
The PCR and TMA tests can detect viral loads as low as 5 IU/mL. The bDNA assay has a lower limit of detection of 615 IU/mL.
Viral load tests are used to confirm active HCV infection, to measure how well medications are working against the virus, and to establish whether someone has been cured of hepatitis C.
The association between viral load and disease progression has not been established—in other words a high or low viral load does not translate into better or worse liver damage.
HCV Genotype Tests:
Genotype tests are used to determine what type(s)—also called “strains”—of HCV an individual carries. This information is used to decide on the medications used to treat hepatitis C. There are 7 genotypes numbered 1 through 7. HCV Genotype 1 is the most common genotype (70-75%) in the United States followed by genotypes 2 and 3 (25-30%). The other genotypes are not as prevalent in the United States.
Biochemical or Liver Function Tests:
Various blood tests are used to assess how well the liver is working. Many of these tests measure non-specific markers of liver function. Liver enzyme tests are part of a hepatic panel (a group of clinical laboratory blood tests used to evaluate a patient with symptoms of liver disease or injury). The most common measurements of liver inflammation are alanine aminotransferase (ALT, formerly known as SGPT) and aspartate aminotransferase (AST, formerly known as SGOT). ALT and AST are enzymes released into the blood when liver cells are damaged. They are often—but not always—elevated in people with hepatitis C.
Many individuals with hepatitis C infection have mild to moderate ALT and AST elevation, which is often the first indication that they are infected. In the past, ALT levels were assumed to be a marker of disease progression due to hepatitis C, but it is now known that some people with chronic hepatitis C experience serious liver disease progression with relatively normal ALT levels. This is why it is important for people with HCV to be monitored with a variety of tests, which may include a liver biopsy or a Fibroscan.
Other measurements of liver inflammation include alkaline phosphatase (ALK) and gamma-glutamyl transpeptidase (GGT). Abnormal levels may indicate cirrhosis or bile duct blockage, as well as other conditions. In addition, your doctor may measure INR (international normalized ratio, formally known as PT or prothrombin time, an indication of blood clotting speed), albumin and bilirubin levels. Albumin is a blood protein produced by the liver that plays a role in maintaining normal blood volume. 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 the use of medications and alcohol, can cause abnormal lab results. Before drawing your own conclusions about the meaning of a test result, check with a healthcare provider.
This test is an alternative to the liver biopsy to assess the level of liver damage. The Fibroscan is usually combined with other liver biochemical blood tests to better gauge liver damage.
Liver biopsies are done to evaluate the severity of inflammation, amount of fibrosis or scarring, and general health of the liver. A biopsy may be used to help the patient and medical provider decide if treatment with antivirals is needed. Serial biopsies are used to assess disease progression over time. The most common procedure is called a percutaneous (through the skin) liver biopsy, in which the skin and muscle near the liver are numbed and a needle is quickly inserted 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.
Experimental Noninvasive Fibrosis Tests:
In recent years researchers have developed several noninvasive methods of assessing fibrosis, in an effort to avoid the discomfort and expense of repeat biopsies. Experts have evaluated the accuracy of several combinations of biomarkers and patient characteristics, including FibroSure, APRI, Fib-4, Forns index, and FibroTest. Noninvasive methods are reasonably accurate in providing information about the amount of liver damage.
Self-Help Tips: Medical History
List your illnesses and surgeries. Start with the most recent and work backwards.
Try to list only the conditions, diseases, or surgeries that are important for your provider to know.
Be honest—your provider can not advise and guide you if you are hiding information. Many people feel like they will be judged if they report that they smoke, drink or take drugs. However, it is important for your provider to know about these things in order to guide you and keep you healthy. Be truthful about your feelings. If you are concerned that you might get lectured, talk about it with your provider.
If possible, review your medical history and records once a month and thoroughly at least once a year.
Hepatitis C Management — Nutrition
Hepatitis C can be a difficult disease to manage. Lifestyle plays an integral part in disease management and treatment. Healthy diet, moderate exercise, and stress reduction are all critical in maintaining good health.
It is important to find a doctor who is both knowledgeable about and sympathetic to people with hepatitis C. Many physicians are not fully educated about HCV infection, 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 on their knowledge about hepatitis C. 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 (digestive disease specialist) or a hepatologist (liver disease specialist).
There is not a specific diet recommended for people with hepatitis C, but the following information is sound nutritional advice. Since the liver processes and detoxifies everything you eat and drink, a healthy, well-balanced diet is helpful. A diet that follows the general guidelines for nutritional health based on the USDA Food Guidance System (www.choosemyplate.gov) is generally recommended. Such a diet is low in fat and sodium, high in complex carbohydrates, and has adequate protein.
A good diet is an important part of hepatitis C management, helping to maintain overall health and prevent obesity-related conditions, which have been linked to faster liver disease progression . Although severe protein-restricted diets are no longer generally recommended for people with liver disease, it is important to avoid certain foods that may have an impact on the liver’s processing and detoxification work. Processed foods often contain chemical additives, so reduce your consumption of canned, frozen, and other preserved foods. If available and possible, 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 the ingredients.
Protein derived from poultry, fish, and vegetable sources may be most beneficial. There is no reason to restrict protein, even if you have cirrhosis. Discuss adequate protein sources and intake with your provider if you have cirrhosis. It is recommended that people with any type of liver disease should not eat raw or undercooked shellfish (even if they are already immune to hepatitis A). Some experts advise people with HCV to avoid foods high in fat, salt, or sugar. Caffeine is a chemical that must be processed by the liver, and it is advisable to consume coffee, tea and soda in moderation.
A well-balanced diet should contain all of the essential vitamins and minerals you need, but talk with your doctor about whether you should take extra vitamins. It is generally recommended that people with hepatitis C take a daily multiple vitamin supplement that satisfies 100% of daily requirements, but without iron.
Taking megavitamin supplements may be harmful. Many people with hepatitis C have low levels of fat soluble vitamins (vitamins A, D, E & K)—ask your medical provider to test these vitamins. Additionally, many patients with cirrhosis have low levels of vitamin A, vitamin D, zinc, and magnesium. If you do not have cirrhosis, avoid taking high doses of vitamins A and D; vitamin A, in particular, can be very toxic to the liver unless taken under the supervision of a medical provider. People with hepatitis C are also generally advised not to take iron supplements unless directed to do so by a knowledgeable medical practitioner.
Inform your medical providers about any vitamins, minerals, supplements, or herbs you are taking, and talk with them about any new products that you are considering. Do not start any unconventional diet without medical advice. In addition to talking with your regular providers, you may wish to consult a licensed nutritionist or dietitian for individual dietary recommendations.
Hepatitis C Management — Drugs & Alcohol
Studies have shown that heavy consumption of alcohol can accelerate liver disease progression. Most experts recommend that people living with HCV and other liver conditions should avoid alcohol since there is no known safe level of use. Many drugs (whether prescription, over-the-counter, or recreational) must be processed by the liver, and people with hepatitis C should avoid recreational drugs and tobacco. Check with your doctor before taking over-the-counter or prescription medications because some can cause liver toxicity, especially in people with existing liver disease. Certain herbal remedies have also been shown to damage the liver.
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 whenever possible.
VACCINATIONS: HEPATITIS A AND B VACCINATIONS
People with HCV are strongly advised to get vaccinated against hepatitis A and B if they are not already immune. Severe HAV and HBV infections have been reported in people who already have HCV. The hepatitis A vaccine consists of two doses administered within a six-month period, and the hepatitis B vaccine typically requires three doses within a six-month period. Both vaccines are made from killed viruses and are considered safe and effective. There is also a combination HAV/HBV vaccine (Twinrix). Twinrix was initially approved with the same dosing schedule as the single HBV vaccines, but the FDA has also approved an accelerated dosing schedule for Twinrix of three shots within 30 days followed by a booster shot after one year.
Self-Help Tip: Choosing a Medical Provider or Specialist
Even if you are satisfied with your current medical provider you should consider the following:
Does the provider seem knowledgeable and experienced about hepatitis C? Will he or she refer you to a specialist?
Does the provider listen and communicate well?
Does the provider explain complicated medical terms and answer all of your questions?
Does the provider give you his or her full attention?
Do you trust the provider to help you make important medical decisions?
Hepatitis C Management — Living Positively, Being Well
Controlling stress is a major factor in managing hepatitis C (HCV) and maintaining overall good health. Living with a chronic disease is stressful. Many people report “flare-ups” (periods of increased symptoms) following episodes of stress. Exercise, meditation, and good time management can all help reduce stress. Try to maintain a realistic picture of your health while keeping 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 symptoms 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 about your energy level.
Plan activities well in advance and try to make realistic work and play schedules. Use a daily planner to help with organizing and remembering activities. Consult your planner regularly when making appointments and scheduling daily tasks. Don’t forget to include restful activities.
Meditation and Prayer
Meditation and prayer can be useful tools very helpful to manage and live well with hepatitis C or any chronic illness. They can reduce stress and help you maintain a healthy outlook on life. Meditation is simple and easy to learn.
Moderate exercise is highly recommended for all individuals who are not in an acute or end-stage phase of hepatitis C. Exercise can help reduce stress, maintain a healthy weight, and promote overall good health and fitness. However, too much exercise can lead to hepatitis C flare-ups (increased symptoms). If this is a concern, select low impact types of exercise such as walking and swimming. Slowly increase your workouts until you reach the desired level. Always check with a healthcare provider before starting any exercise program.
Many people with HCV feel isolated and find it difficult to cope with the effects of living with a chronic illness such as hepatitis C. A support group can offer a safe place to discuss the emotional issues surrounding hepatitis C. Furthermore, the information shared by peer members can be helpful in making important decisions about a wide variety of issues. It is highly recommended that you join a support group while undergoing HCV treatment. Support group information can be found on the Hepatitis C Support Project website or by contacting the organizations listed here.
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 websites that contain misleading information. Remember that not all the information you find on the Internet is correct, and if something sounds too good to be true, it probably is. Talk to your medical provider regarding any information you are unsure of or concerned about. Common sense can take you a long way! Visit the Hepatitis C Support Project website for recommended websites.
Self-Help Tip: Staying Healthy
See your healthcare providers for regular check-ups—make sure to tell your healthcare provider about any problems or unusual symptoms.
Eat a healthy and balanced diet that includes a lot of vegetables and fruit—try to stay away from too much sugar and fat.
Rest when you are tired—try to find time for relaxation.
Exercise regularly with activities like walking.
Protect your liver by getting vaccinated against hepatitis A and hepatitis B if you have not been previously infected.
Cut down or stop drinking alcohol—if you can’t stop get some help.
Be careful when using over-the-counter drugs such as Tylenol and ibuprofen—never mix with alcohol with any medication.
Join a support group to talk with and learn from others who have been in the same situation.
Chronic hepatitis C is a liver disease that can have serious consequences. It is important to remember that many people do not experience symptoms or disease progression, but there is no way to know in advance who will and who won’t develop serious disease progression. Many people who do eventually experience disease progression may remain relatively symptom-free for many years, but some develop severe disease that can result in liver failure or death. This is why it is so important that people with hepatitis C are closely monitored by knowledgeable medical providers and have access to appropriate healthcare and treatment.
Current medications to treat hepatitis C can now cure up to 90 to 100% of people who take them. Many more drugs are currently being tested. Future therapies may work better, have fewer side effects, have shorter treatment periods and will cure almost everyone with hepatitis C. In the meantime, lifestyle changes such as healthy diet, exercise, and stress management can help alleviate the side effects of living with hepatitis C and the existing therapies. Ultimately, as a person living with hepatitis C, you have the most important role in your health maintenance. Education, support, and a good relationship with a healthcare provider will help ensure that you receive the best possible medical care.
The HCV Advocate website offers information about almost every topic about hepatitis C. The best place to start is the search button located on the main page. Other good sources of information are the webpages that contain our fact sheets and comprehensive guides, and the latest treatment information.
We hope this information has helped you to understand the hepatitis C virus and how it can affect your physical and emotional health. We are always open to suggestions or ideas to improve our information and services. Please email me at firstname.lastname@example.org
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