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Patient education: Hepatitis C (Beyond the Basics)

Patient education: Hepatitis C (Beyond the Basics)
Literature review current through: May 2024.
This topic last updated: Feb 07, 2024.

INTRODUCTION — Hepatitis is the medical term for inflammation of the liver. It can be caused by a number of factors, including viruses (like hepatitis B and C), alcohol abuse, certain medications, including herbal products, and poisons.

Most people infected with the hepatitis C virus have no or only mild symptoms, so they do not always know they are infected.

In some people, over time, chronic infection with the hepatitis C virus can damage the liver and lead to cirrhosis. Drinking alcohol, being overweight, and using marijuana add to the risk of developing cirrhosis. (See "Patient education: Cirrhosis (Beyond the Basics)".)

TRANSMISSION OF HEPATITIS C — Many people with hepatitis C infection do now know how they were infected. The hepatitis C virus is spread by contact with blood. The most common ways people have gotten infected are:

Sharing needles, syringes, or other paraphernalia used for injection drug use

Receiving a blood transfusion before 1990, when blood was not routinely tested for hepatitis C or other infections

Having sex with an infected person

It is also possible to get the hepatitis C virus by:

Getting body piercings or tattoos done with improperly sanitized equipment

Sharing straws used for snorting cocaine

Sharing toothbrushes, razors, or other things that could have blood on them

Getting stuck with a sharp object that has contaminated blood on it (as might happen in a health care setting)

Pregnant women have about a 5 percent chance of passing the virus on to the developing baby.

There is no evidence that any of the following activities lead to transmission of hepatitis C:

Kissing or hugging

Sneezing or coughing

Casual contact or other contact that does not involve blood

Sharing food, water, eating utensils, or drinking glasses

Acute versus chronic hepatitis C infection — When people are first infected with the hepatitis C virus, they develop what is called an acute infection. Some people are able to fight off the infection at this stage and become cured. But most people – 60 to 80 percent of those infected – go on to develop a chronic infection. That means the virus remains active in their body, even if they do not know they have it.

Prevalence — Hepatitis C is fairly common, affecting almost 3 percent of the population worldwide and about 1 percent of the population in the United States. The rate of hepatitis C infection has fluctuated over time, but remains high. Specifically, hepatitis C infection rates have increased among young adults in the United States, likely reflecting the epidemic of opioid and injection drug use. Hepatitis C also remains a concern among people born between 1945 and 1964, many of whom are unknowingly infected.

SYMPTOMS OF HEPATITIS C — Most people with hepatitis C have no symptoms or only mild nonspecific symptoms that are difficult to attribute to the infection. Among those who do have symptoms, the most frequent complaint is fatigue. Other less common symptoms include nausea, decreased appetite, muscle or joint pain, weakness, and weight loss.

DIAGNOSIS OF HEPATITIS C — Health care providers diagnose hepatitis C using two types of test. One type of test checks the blood for antibodies (proteins made by the immune system in response to the virus). If your health care provider orders this, you can get your blood drawn in a lab for testing; you can also buy an antibody test kit to take a small sample of your blood at home then mail it to a lab.

The other type of test checks for a substance called RNA made by the virus itself. Most people who have a negative antibody test do not have hepatitis C infection and do not need additional testing. However, health care providers may also order an RNA test if they suspect acute infection or if the person being tested has a potentially compromised immune system (such as those with HIV infection). People who have an active chronic infection will have both a positive antibody test and a positive RNA test. People who have a positive antibody test and a negative RNA test either had a false positive antibody test or had the infection at one time but were able to fight it off.

Who should be tested? — The United States Centers for Disease Control and Prevention (CDC) recommends that all adults get tested at least once for hepatitis C, and people with certain risk factors (such as a history of injection drug use) get repeat screening. Other expert groups have slightly different recommendations; your provider can talk to you about whether you should be tested.

Determining the virus genotype — Once a diagnosis of hepatitis C is made, it’s important to identify the variant of the virus a person has. There are several forms of the virus—called genotypes—each of which must be treated differently. In the United States, genotype 1 is the most common, but genotypes 2 and 3, and less commonly 4, also occur. The most commonly used medications for hepatitis C can treat all genotypes.

Assessing the degree of liver damage — Another important aspect of hepatitis C diagnosis is to determine the condition of the liver at the time of diagnosis. Health care providers can assess the degree of liver damage using a number of blood tests, an imaging test called ultrasound-based transient elastography (which is not available everywhere), or, rarely, a liver biopsy. (See "Patient education: Liver biopsy (Beyond the Basics)".)

Checking for other infections — People who have hepatitis C are at risk for infection with HIV and hepatitis B, in part because these infections can be transmitted in the same way as hepatitis C. They are also more vulnerable to any infection that targets the liver. As a result, after diagnosing hepatitis C, health care providers often do follow-up tests for HIV, and hepatitis A and B. People whose tests show they are not immune to hepatitis A and B should get vaccinated against these infections.

TREATMENT OF HEPATITIS C — There are a number of medications to treat hepatitis C. In the vast majority of people, these medications have an excellent chance of curing the infection.

Decision to treat — People diagnosed with hepatitis C must decide – in conjunction with their health care providers – whether and when to treat their infection. In general, treatment is safe and effective, and anyone with hepatitis C should consider getting treatment. Factors that go into making treatment decisions include the condition of the person's liver, the person's overall health, and the genotype the person has. Other factors to consider include whether the person has other illnesses, such as kidney disease, and whether the person already had a liver transplant. Antiviral medications should not be started during pregnancy as their safety in this setting has not yet been evaluated.

Treatment regimens — People who do undergo treatment use one or more medications for several months. The specific combination of agents and the duration of treatment are determined based on the genotype involved and the person's individual characteristics. Most treatment regimens are for three months, although, in some situations, the duration of treatment can be as short as two months.

Most hepatitis C medications can interact with other medications. Before you go on any medications for hepatitis C, make sure to tell your health care provider about all the medications you take, including herbal and non-prescription medications.

Side effects caused by hepatitis C medications — People being treated for hepatitis C sometimes develop medication side effects, although most are not serious. If you are being treated for hepatitis C, you should call your health care provider any time you develop a side effect that bothers you. Some of the medications used to treat hepatitis can make you tired, nauseated, or have headaches.

If you get any side effects that bother you, tell your health care provider. In very rare cases, people need to stop taking their medications because of side effects. But DO NOT STOP TAKING YOUR MEDICATIONS because of side effects until you speak with your health care provider. Only he or she can tell if you need to stop the medications. Besides, your health care provider might have a way to deal with the side effects so that you can keep taking the medications. For example, if you feel sick to your stomach, your health care provider might give you a medication to help with this. If you have anemia, your health care provider might lower the dose you take of the medication causing the problem. There are often ways to deal with side effects so that you are comfortable enough to keep taking your medications.

Even if your health care provider can’t make your side effects go away completely, remember that you only need to take these medications for a while. If you put up with some side effects, there is a good chance you will be cured.

Will I be cured? — If you take your medications exactly as directed, the chances of being cured are excellent. With the newest treatments, people who have not been treated for hepatitis C before are cured over 90 percent of the time. People who have failed treatment before or who have cirrhosis have a slightly lower chance of cure.

Three to six months after discontinuing treatment for hepatitis C, your health care provider will give you a blood test to see if you are cured. If there is no trace of the virus in the blood, this is referred to as a sustained virologic response (SVR) and is considered a cure. If you are not cured after your first course of treatment, he or she might suggest trying treatment again with a different combination of medicines.

Being cured of hepatitis C means the virus is no longer in the body and can no longer cause damage to the liver. Hepatitis C is the only chronic viral infection in humans that can be cured in this way, without any trace of the virus in the blood, liver, or elsewhere in the body. For most people, liver scarring that was caused by hepatitis C can slowly improve over time after a cure. However, for people with cirrhosis, a small risk of worsening liver disease or liver cancer remains even after being cured of hepatitis C.

Being cured of hepatitis C does not make a person immune to the virus. A person who has been treated and cured of hepatitis C can be reinfected after a repeat exposure to the virus.

Importance of taking hepatitis C medications as directed — If you are being treated for hepatitis C and you take the medications the wrong way, they probably will not work as well as they should. You can also end up doing yourself more harm than good. With some of the medications, if people skip doses or do not take all their medications, the hepatitis C virus can quickly become "resistant." That means that the virus learns to outsmart the medications, and so the medications will not work.

To help you remember to take all of your medications at the right time, use special reminders called "memory aids." For instance, use a "talking pill box" or a wrist watch or smart phone app that can be set to tell you whenever it’s time to take your pills.

COMPLICATIONS OF HEPATITIS C — Over time, the liver inflammation caused by hepatitis C can cause serious damage to the liver. In some people, this develops into cirrhosis, which is when the liver becomes severely scarred and cannot function normally. Cirrhosis is discussed in more detail elsewhere. (See "Patient education: Cirrhosis (Beyond the Basics)".)

Successful treatment of hepatitis C prior to the development of cirrhosis prevents this complication. Even people who have already developed cirrhosis from hepatitis C have a reduced risk of liver-related complications and death after being cured of hepatitis C. However, since there is still a small risk of liver cancer in the setting of cirrhosis, patients who have cirrhosis will need continual monitoring by their doctor even if they are cured of hepatitis C.

LONG-TERM MANAGEMENT OF HEPATITIS C — There are aspects of treating hepatitis C not directly related to tackling the infection. People with the disease need certain vaccines, and they need to avoid alcohol, recreational drugs, and certain medications.

Vaccines to protect the liver — Vaccines against hepatitis A and B (in those who are not already immune) can help prevent further damage to the liver. It’s also important to get other vaccines, including vaccines to protect against the flu (once a year), pneumonia (at least once), diphtheria and tetanus (once every 10 years) and pertussis (once during adulthood). There is currently no vaccine to prevent hepatitis C.

Avoid alcohol and other drugs that could harm the liver — People with hepatitis C should avoid all substances that are known to damage the liver. This includes:

Alcohol

Some supplements and herbal remedies, such as kava

Some prescribed medications

People who also have cirrhosis have additional medications they should avoid. (See "Patient education: Cirrhosis (Beyond the Basics)", section on 'Avoid alcohol and other drugs that could harm the liver'.)

To find out if anything you take could harm your liver, put all the bottles of all the medications you take into a bag and take them with you to the doctor who manages your liver disease. Include all over-the-counter medications, supplements, and herbal drugs, as well as any prescriptions you take. Never start any new medications or supplements without first checking with your doctor.

Screening tests — If you have hepatitis C and cirrhosis, you should have an ultrasound done every six months to check for signs of cancer. You might also need a procedure called an upper endoscopy to check for esophageal varices (enlarged veins in the esophagus). (See "Patient education: Esophageal varices (Beyond the Basics)".)

Support — Sharing your concerns with others who have the same diagnosis can help you learn to live with hepatitis C. The American Liver Foundation has helpful advice and a list of support groups (www.liverfoundation.org).

WHERE TO GET MORE INFORMATION — Your health care provider is the best source of information for questions and concerns related to your medical problem.

This article will be updated as needed on our web site (www.uptodate.com/patients). Related topics for patients, as well as selected articles written for health care professionals, are also available. Some of the most relevant are listed below.

Patient level information — UpToDate offers two types of patient education materials.

The Basics — The Basics patient education pieces answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials.

Patient education: Hepatitis C (The Basics)
Patient education: Cirrhosis (The Basics)
Patient education: Blood or body fluid exposure (The Basics)
Patient education: Treatment for hepatitis C (The Basics)
Patient education: Liver transplant (The Basics)

Beyond the Basics — Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are best for patients who want in-depth information and are comfortable with some medical jargon.

Patient education: Hepatitis A (Beyond the Basics)
Patient education: Hepatitis B (Beyond the Basics)
Patient education: Blood donation and transfusion (Beyond the Basics)
Patient education: Liver biopsy (Beyond the Basics)
Patient education: Cirrhosis (Beyond the Basics)
Patient education: Esophageal varices (Beyond the Basics)
Patient education: Pneumonia prevention in adults (Beyond the Basics)
Patient education: Influenza prevention (Beyond the Basics)
Patient education: Vaccines for adults (Beyond the Basics)

Professional level information — Professional level articles are designed to keep doctors and other health professionals up-to-date on the latest medical findings. These articles are thorough, long, and complex, and they contain multiple references to the research on which they are based. Professional level articles are best for people who are comfortable with a lot of medical terminology and who want to read the same materials their doctors are reading.

Characteristics of the hepatitis C virus
Clinical manifestations and natural history of chronic hepatitis C virus infection
Clinical manifestations, diagnosis, and treatment of acute hepatitis C virus infection in adults
Epidemiology and risk factors for hepatocellular carcinoma
Epidemiology and transmission of hepatitis C virus infection
Extrahepatic manifestations of hepatitis C virus infection
Hepatitis C virus infection in kidney donors
Hepatitis C virus infection in patients on maintenance dialysis
Hepatitis C virus infection in liver transplant candidates and recipients
Vertical transmission of hepatitis C virus
Pregnancy in women with pre-existing chronic liver disease
Overview of the management of chronic hepatitis C virus infection
Treatment of chronic hepatitis C virus infection in the patient with HIV
Immunizations for adults with chronic liver disease
Management of chronic hepatitis C virus infection: Antiviral retreatment following relapse in adults
Screening and diagnosis of chronic hepatitis C virus infection

The following organizations also provide reliable health information:

National Library of Medicine

     (www.nlm.nih.gov/medlineplus/hepatitisc.html)

National Institute of Diabetes and Digestive and Kidney Diseases

     (www.niddk.nih.gov/health-information/liver-disease/viral-hepatitis/hepatitis-c)

[1-3]

  1. Chou R, Cottrell EB, Wasson N, et al. Screening for hepatitis C virus infection in adults: a systematic review for the U.S. Preventive Services Task Force. Ann Intern Med 2013; 158:101.
  2. Holmberg SD, Spradling PR, Moorman AC, Denniston MM. Hepatitis C in the United States. N Engl J Med 2013; 368:1859.
  3. Recommendations for Testing, Managing, and Treating Hepatitis C. Joint panel from the American Association of the Study of Liver Diseases and the Infectious Diseases Society of America. http://www.hcvguidelines.org/ (Accessed on August 11, 2014).
Disclaimer: This generalized information is a limited summary of diagnosis, treatment, and/or medication information. It is not meant to be comprehensive and should be used as a tool to help the user understand and/or assess potential diagnostic and treatment options. It does NOT include all information about conditions, treatments, medications, side effects, or risks that may apply to a specific patient. It is not intended to be medical advice or a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances. Patients must speak with a health care provider for complete information about their health, medical questions, and treatment options, including any risks or benefits regarding use of medications. This information does not endorse any treatments or medications as safe, effective, or approved for treating a specific patient. UpToDate, Inc. and its affiliates disclaim any warranty or liability relating to this information or the use thereof. The use of this information is governed by the Terms of Use, available at https://www.wolterskluwer.com/en/know/clinical-effectiveness-terms. 2024© UpToDate, Inc. and its affiliates and/or licensors. All rights reserved.
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