Frequently Asked Questions - Hepatitis C for Patients
Hepatitis means "inflammation of the liver." Hepatitis can be caused by a virus, such as hepatitis A virus, hepatitis B virus or hepatitis C virus. Hepatitis can also be caused by alcohol (causing alcoholic hepatitis). There are other conditions that can cause other types of hepatitis but these are the main causes. Longstanding hepatitis--from viruses or alcohol--can lead to scarring in the liver called cirrhosis.
The Centers for Disease Control and Prevention (CDC) think that 2.4 million Americans are infected with HCV. It is the most common infection carried by blood in the United States. Veterans have higher rates of hepatitis C than the rest of the country so it is especially important to discuss hepatitis C testing with your provider if you are a Veteran. But, Veterans are not the only ones with high rates of hepatitis C. Baby boomers (people born between 1945-1965) have higher rates of hepatitis C than people in other age groups in the country as well. Often, people infected with hepatitis C are not aware of their infection because they have no symptoms and they do not feel ill so getting tested if you are at higher risk is important step.
When someone is first infected with hepatitis C, most likely they have no symptoms and are unaware. Occasionally people experience fatigue, loss of appetite, weakness or sometimes having a yellow color in their skin or eyes. Although having any symptoms at all is rare, if they do occur, they usually go away within a few weeks.
Around 15-25% of people who are infected will spontaneously fight off the virus on their own and they will not have a chronic hepatitis C infection and no long term damage occurs.
But around 75-85% of people will develop chronic infection. Most of the time, people with chronic hepatitis C have no symptoms at the time of infection and no symptoms for years or even decades of chronic infection. The virus will be with them until they are successfully treated with hepatitis C medications.
Around 10-20% of people with chronic infection will slowly have gradual damage in the liver over years and will eventually develop cirrhosis (severe scarring of the liver). This can take 20 years or more from the time of the initial infection.
Cirrhosis is the replacement of liver cells with permanent scar tissue. Cirrhosis can lead to problems such as bleeding from veins in the esophagus, fluid buildup in the belly, and damaged brain function. Approximately 15% of people with cirrhosis will develop liver cancer (hepatocellular carcinoma, or HCC) during their lifetime. Drinking excessively can double the chance of liver cancer in people infected with HCV.
Yes. Having chronic hepatitis C is actually a good reason to get the flu shot. Chronic hepatitis C is a condition that can increase your risk of complications if you do get influenza. That's why it is recommended for people with hepatitis C, and most chronic liver diseases, to be vaccinated against the flu.
To stay up to date with your influenza vaccinations, you need to be vaccinated every year--ideally, early in the flu season or as soon as the vaccine becomes available. Typically, flu season is considered to be October to March. It's best to get vaccinated annually because the vaccine is designed differently each year to target the strains of influenza that are expected to circulate during that particular flu season.
Everyone should avoid eating a lot of fat, cholesterol, salt and processed sugar, even if their liver is healthy. In addition, those with HCV should limit or avoid alcohol. Drinking alcohol will speed up liver damage.
Eating properly can help decrease some of the symptoms of Hepatitis C, like feeling tired and sick. Drink lots of water for general health benefits. HCV is not a digestive disease; diet will not affect the disease. Your provider may put you on a special diet if you have advanced liver disease.
Transmission and Risk
Household transmission of hepatitis C is extremely rare. Here are some ways the virus is transmitted:
- Injecting drugs, such as heroin, even if it's only once. The needles and other drug "works" that are used to prepare or inject the drug may have had someone else's blood that contained HCV on them.
- Being a health care worker with frequent contact with blood on the job, especially from accidental needlesticks.
- Having a mother who had hepatitis C when she gave birth to you.
- Sharing items such as razors, toothbrushes, and other personal health items that might have had blood on them.
- Getting a tattoo with unsanitary instruments, as they might have someone else's blood on them.
- Having unprotected sex with multiple partners. Although hepatitis C rarely is spread through sexual contact, it can happen.
The number one risk factor for infection and transmission is sharing needles for intravenous drug use. Most people who use IV drugs become infected with HCV within one year of sharing needles. Learn more.
There is not enough evidence to confirm this as a risk factor. Please see the Veterans Benefits Administration's letter on this issue.
Household transmission of hepatitis C is extremely rare. Fewer than 1 in 1,000 family members or close acquaintances becomes infected each year through common, nonsexual contact with hepatitis C-infected persons.
There are many possible ways by which hepatitis C could be passed from one person to another. Because the virus is carried in the blood, it could be transmitted between household members if a mucous membrane (for example, in an eye, the mouth, or the nose) were to come in contact with blood or body fluids containing hepatitis C. Family members sometimes share razors, toothbrushes, or toothpicks, perhaps unknowingly. If an item were contaminated with hepatitis C-infected blood from one person, the virus could be passed to a second person if it were to tear the lining of the mouth or break through the skin.
Although these sorts of possibilities are often discussed as potential ways for hepatitis C to infect family members, such events occur very rarely.
If you aren't sure of your hepatitis C status, get tested. If you test negative and have lived in a household with an infected family member or close acquaintance, you shouldn't worry that any more contact will put you at risk.
Hepatitis C is a virus that is transmitted by blood. The most common ways people become infected with hepatitis C are through needle sharing, such as during injection drug use, or from blood transfusions received before 1992.
Becoming infected from sex is not common, but it does happen. If you have hepatitis C, the chance of infecting a sex partner is higher if you are with a new partner or if you have had many different partners over time. If you have hepatitis C, the chance of infecting a sex partner is lower if you are with a longtime stable partner and if you are in a monogamous relationship.
If your sex partner is new to you, or if you have many different partners, it is safer if you use condoms during sex to reduce the chance of transmitting hepatitis C.
It is always best to talk directly with your health care provider to assess whether you should start using condoms. If you are in a sexual relationship and either you or your partner has hepatitis C, the other partner should be tested for hepatitis C and other sexually transmitted viruses once a year, or as advised by your provider.
If you become infected with hepatitis C infection and then clear the virus (either by successful treatment or by spontaneously clearing it on your own, early after infection), yes, it is possible for you to become infected again.
The chance of another infection with hepatitis C (called "reinfection") is much, much less than the chance of a first-time infection, but it is not impossible. It has happened in people who continue to use injection drugs, and some studies suggest that it happens even more often in people who are also HIV positive.
In other words, having had hepatitis C once does not make you "immune" to getting hepatitis C again.
The best way to avoid reinfection is to reduce risky behaviors that can result in exposure to the hepatitis C virus: Do not use injection drugs, do not share needles for any reason, avoid blood-to-blood exposures with others, and use condoms if you are sexually active with a new partner or with a partner who has used injection drugs.
The research in this area is ongoing, and we will continue to learn more about this very important topic. But for now, preventing re-exposure to the hepatitis C virus is the only sure way of avoiding infection and reinfection with hepatitis C.
No, you cannot donate blood if you ever had hepatitis C, even if you spontaneously cleared the virus or if you were successfully cured with medication.
Use of Drugs and Alcohol
Alcohol can clearly contribute to worsening liver disease. You must discuss with your health care provider if any amount of alcohol is safe for you.
Alcohol can cause inflammation and scarring in the liver. If you have any underlying liver condition, such as hepatitis C or hepatitis B or damage from long-term alcohol use, your liver will be more sensitive to alcohol. When you have hepatitis C virus, alcohol on top of the hepatitis C can cause the inflammation and scarring to be worse, and overall damage to the liver may happen much faster when you drink alcohol.
Here is some helpful information about alcohol and hepatitis:
- No one knows exactly what amount of alcohol is "safe" when you have hepatitis C. Some small amounts of alcohol may be safe while you have hepatitis C and have mild damage in the liver, but if you have cirrhosis, then no amount of alcohol is safe and you should not drink at all.
- All forms of alcohol can be damaging. In other words, beer and wine are not "safer" than whiskey.
- If you have severe scarring (cirrhosis), then you should not drink any alcohol at all.
- If you are awaiting a transplant, you also cannot drink any alcohol at all.
Tylenol (acetaminophen) is an over-the-counter pain killer. It can be harmful in high doses. If you have hepatitis or liver disease, then you can take Tylenol, but no more than 2,000 mg (2 grams) total over 24 hours. In general, this could be one 500 mg tablet every 6 hours, at the most. Acetaminophen is also included as an ingredient in some opiate medications and in some over-the-counter cold/flu medications, so please be aware of the dose of acetaminophen you may be taking from some combination medicines.
Aspirin, ibuprofen (Advil, Motrin, Advil, etc.), naproxen (Aleve), and other nonsteroidal anti-inflammatory drugs (NSAIDs), can be harmful if you have cirrhosis. They are safe in hepatitis patients who do not have cirrhosis. But, if a patient has cirrhosis, then NSAIDs cannot be taken at all. If you are not sure, always check with your provider.
Informing someone that you have hepatitis C can be hard. Most people know little about this disease. You can start with how you found out about your diagnosis. It helps to be prepared with educational materials on HCV, and to be aware of the ways that people can and cannot be infected. For example, it is very rare for HCV to be transmitted during sex. Be sure to tell anyone who may be directly affected, such as:
- People you have shared needles with
- Household members
- Friends and family members you can count on for support. It's okay to ask that they keep this information private.
You may want to encourage others to be tested for HCV if they have similar risk factors.
There are many organizations that offer support services. Ask your provider what is available locally. Many websites can direct you to support services (see Additional Resources).
Anyone can help raise awareness about this widespread disease. Citizens can write letters to their state representatives or local newspapers and get involved in volunteer efforts with liver disease or Veteran-affiliated organizations (see Additional Resources for some groups to start with). Speaking at support groups and sharing your experience is also a good way to help others with HCV.
Hepatitis C does not prevent a man or woman from having children.
The hepatitis C virus infection does not cause infertility in either sex--it does not affect a woman's ovarian or uterine function, or a man's sperm production or sperm characteristics.
If you are a woman with hepatitis C, talk to your provider about treatment before pregnancy. Treatment before pregnancy can help reduce the risk of hepatitis C transmission to your baby. If you are already pregnant, treatment will usually take place after pregnancy and you may need to be tested for hepatitis C again prior to starting treatment.
If you are a man with hepatitis C, talk to your provider about being treated prior to conceiving. Although the risk of transmission during sex is low, it is still important to treat hepatitis C for your personal health.
No. Babies have extremely low risk of being born with hepatitis C. Talk with your provider about curing your hepatitis C before becoming pregnant or how to manage your hepatitis C while pregnant.
The baby's risk of becoming infected with hepatitis C in the womb varies, depending on whether the parent with hepatitis C is the father or the mother.
If the mother is infected, whether or not the father is infected, there is a 5% chance that the baby will be born with hepatitis C. The risk is the same regardless of whether the birth occurs by vaginal delivery or by cesarean section. The risk is higher if the mother is also living with HIV.
If the father has hepatitis C but the mother does not, the baby cannot become infected because a father cannot pass the virus directly to a baby. If the father first passes the virus to the mother through sex, then the baby possibly could be infected by the mother. However, the chance of the virus being transmitted both from father to mother and then from mother to baby is almost zero.
All children born to HCV-infected women should be tested for HCV infection. Testing is recommended using an antibody-based test at or after 18 months of age. Approximately 25-50 % infants with hepatitis C will clear the infection without any medical help by age 4. For those who become chronically infected, most have no symptoms (but their lab tests will show abnormal liver enzymes).
Testing and Diagnosis
There are two blood tests needed to diagnose hepatitis C:
The antibody test--called HCV antibody, HCV Ab, or anti-HCV--is done first. (Antibodies are substances produced by the immune system to fight off the virus.) If this test is positive, it means that you have been infected with hepatitis C at some point in the past. If your antibody test is negative, then you have never been infected with hepatitis C; if you were infected within the past month or so, the test may not be accurate; you may needed to be retested at a later date.
However, a positive antibody test does not tell you if you still have hepatitis C. For that, you need to have a HCV RNA test, which determines whether the virus itself is in the bloodstream.
If any RNA is present in the blood after 6 months from time of infection, then you have chronic hepatitis C.
If no RNA is detected in the blood after 6 months, you no longer have hepatitis C.
A "liver panel" usually includes tests called AST, ALT, bilirubin, alkaline phosphatase, and some others. Abnormal results could show up in many different conditions, not just hepatitis C. And even if the results of a liver panel are normal, you might still have hepatitis C. So, the liver panel alone cannot tell your provider the answer.
Hepatitis C can be diagnosed only by blood tests that are specific to hepatitis C:
- A hepatitis C antibody test can tell you whether you have ever been infected with the hepatitis C virus, but can't by itself tell you whether the infection is still present.
- A hepatitis C RNA test looks for the actual virus in the bloodstream. A positive result indicates an ongoing hepatitis C infection. If the RNA test result is negative (and remains negative after repeated testing), then you do not have a chronic hepatitis C infection.
In short, if the results of one or more tests on a liver panel are abnormal, generally speaking, the tests should be repeated and confirmed. If the results remain abnormal, your provider should be prompted to look for the cause.
More important than using the liver panel, if you have risks of having been infected with hepatitis C (such as injection drug use or a blood transfusion before 1992) then you should have the specific hepatitis C antibody test to determine if you have hepatitis C infection.
When your provider wants to test you for hepatitis C, the first test you will have is the hepatitis C antibody (anti-HCV). If this test is positive, it means you were infected with the hepatitis C virus at some point in the past. But this test alone is not enough. You will still need another test (called HCV RNA) to confirm if you still have the hepatitis C virus in your system. About 1 out of 5 people who get infected with hepatitis C will be able get the rid of the virus on their own, without treatment, very early after their infection. So some people will have a positive antibody test, but a negative HCV RNA (no virus in their bloodstream).
So, the second test that your provider should request is called hepatitis C virus RNA or HCV RNA test. There are several different tests available to check the HCV RNA. What matters is that if the RNA test is positive, then you do have chronic hepatitis C virus infection. If the RNA test is negative, then you may need to have this test again to be sure. If these RNA tests are all negative, then you no longer have hepatitis C infection and do not have chronic hepatitis C.
If your hepatitis C antibody test is positive, be sure that you get tested for hepatitis C RNA to find out whether the infection has become chronic or whether it has cleared. If the infection has become chronic, there are treatments your provider can prescribe to fight off the hepatitis C virus and keep your liver healthy.
The first test your provider probably will perform is called an "antibody" (or anti-HCV) test. A positive result means that you were exposed to the hepatitis C virus at some point in your life.
If the result is positive, your provider will perform a second test called hepatitis C virus RNA (or HCV RNA) to see if the virus is still in your body. If the RNA test result is positive, then you have chronic hepatitis C infection.
So what does it mean if you have a positive result for the first test but a negative result for the second?
- The most likely explanation is that you were infected with hepatitis C but your own immune system fought off the virus. This means you do not have chronic hepatitis C infection, and are not at risk of any medical problems related to hepatitis C.
- The second possible explanation is that you were infected with hepatitis C but the amount of virus in your body is too small to be detected by the standard test. If someone had virus that was present but such a low amount that the test wasn't able to detect it, then there could be a "false negative HCV RNA" test. But the newest techniques used by labs for HCV RNA are extremely sensitive and can detect as few as 12 copies of the virus (12 IU/mL). So, this scenario is possible where you could have a false negative test, but it is unlikely.
- The third possible explanation is that your first test results (from the HCV antibody test) are incorrect, and you weren't infected with hepatitis C in the first place. This would be a "false positive antibody" test. This error doesn't happen very often, but it's possible. In this situation, you may need a third kind of test, called HCV RIBA test--the RIBA test is to confirm the antibody as a true positive or a true negative. If the RIBA test is positive then you truly have HCV antibody. If the RIBA test is negative, then you do not have HCV antibody even if the antibody test itself was positive. A negative result means you were never infected with hepatitis C at all.
Viral load is the amount of virus present in the bloodstream. It is expressed as the amount of viral genetic material (RNA) per milliliter of blood. The amount of virus does not predict how severe the liver disease is or will become. The level of the viral load does not tell us anything about the risk of liver damage or how sick someone is. In hepatitis C, it matters if virus is present (at any level) or absent. Some treatment regimens can be shortened if the patient has a low viral load to start with, but most often, treatment regimens are the same for people with high hepatitis C viral loads or low viral loads.
The RNA test is essential for making the diagnosis of hepatitis C infection--having a positive RNA test is the definition of having infection. After the diagnosis is made, the RNA level (the viral load) does not need to be checked over and over unless it is checked during the time that the patient is undergoing treatment. During treatment, regular RNA tests are done to follow the dropping virus level until it reaches an undetectable state. But before treatment and after treatment, repeated RNA testing is not necessary.
A biopsy is a medical procedure. A tiny piece of liver (1/50,000 of the total mass) is removed and examined to find out the extent of damage. It involves a large needle and local anesthetic, as well as some risk of bleeding. A pathologist looks at the piece of liver under microscopes to determine how much damage (called fibrosis) has occurred in the liver. This is a very useful test and used to be done very commonly. However, the procedure is done much less frequently than in the past. For most patients with hepatitis B and C, liver biopsy is not required. Today, other tests can be used to try to estimate the fibrosis in the liver.
Viruses have genes, too. The genotype of virus you have can be one of six different groups, or genotypes. Most patients with hepatitis C in the United States have genotype 1a or 1b, but in other parts of the world, other genotypes are more common.
There isn't a "better" or "worse" genotype to have. In the past (when hepatitis C was treated with interferon), genotype 1 was the most difficult to successfully cure but this is no longer the case. All the new direct-acting antiviral medicines work extremely well in treating all genotypes. Sometimes genotype 3 is a little harder to cure, but in general, all genotypes now have extremely high likelihoods of being cured with hepatitis C treatment.
There are several different blood tests, or "labs" that your provider may order for you. The tests measure the amounts of various proteins and enzymes that the liver produces. This is a way of finding out how damaged the liver is. Your provider can determine how often each test needs to be done. Please see Understanding Lab Tests for more details about the tests you may have.
Virologic response means that the hepatitis C virus is not detected in the blood during treatment. When the virus continues to be undetectable 12 weeks or more after completing treatment, a "sustained" virologic response (SVR) has been achieved. Learn more.
Treatment decisions should be made by both you and your provider. Current treatments for hepatitis C are very successful and can cure most people of the virus.
- Treatment regimens exist for all genotypes.
- Treatment regimens exist for HCV-HIV coinfection.
- Treatment regimens exist for all stages of disease (the degree of scarring in the liver).
- Treatment regimens exist for patients who have taken treatment in the past but were not successful.
The goal of treating chronic hepatitis C is to completely clear the virus. This means that your "viral load" (the number of virus copies detected from your blood test) is zero or so low that the virus can't be detected with standard blood tests.
Without treatment, the hepatitis C virus in liver cells constantly makes copies of itself, and the virus ends up not just in liver cells but also in the bloodstream. Treatment is intended to completely stop reproduction of the virus so that it doesn't continue to enter the bloodstream or cause any more injury to liver cells.
Successful treatment results in a "sustained virological response." This means the virus becomes completely undetectable (the blood test cannot find any virus at all) before the treatment is finished, and it remains undetectable for 6 months after treatment is stopped.
A "relapse" means the viral load drops to an undetectable level before treatment is completed, but becomes detectable again within 6 months after treatment is stopped. Even if the virus returns at a level that is lower than it was before treatment, a relapse is still considered to have occurred. A relapse can be determined if the viral load starts to rise during treatment, or at any time after the virus becomes undetectable.
A "nonresponse" means the viral load never drops significantly and the virus remains detectable throughout the course of treatment.
A rapid response can occur as early as 4 weeks into treatment. However, a nonresponse is not determined until after 6 months of treatment. If the viral load has not dropped significantly or the virus has not become undetectable by that time, treatment probably would be stopped because it is very unlikely that a sustained virologic response could be achieved after that point.
Taking any medicine correctly is extremely important. Taking medicines correctly means:
- not skipping doses
- taking the medicine as instructed, such as with or without food
- not running out of the medicine before you have picked up your refill
- not stopping the treatment earlier than planned
For hepatitis C drugs, these issues are especially important because, if a medicine is not taken correctly, it may not kill the virus completely. Then, because the virus has "seen" the drug, it learns how to mutate and change in ways that allow it to escape the drug and avoid getting killed off. This is called drug resistance.
Developing drug resistance is a serious issue. It means that the treatment may not work and that the patient may not respond to future treatments.
To prevent drug resistance, it is important to take any medication correctly, but especially DAAs such as Harvoni, Mavyret, Epclusa, and Zepatier.
Resistance can develop quickly. It is very important to take these new antiviral medications according to instructions, on schedule, and not to skip or reduce doses.
Treatment Side Effects
The direct acting antiviral (DAA) regimens used to treat hepatitis C today are extremely well tolerated. You may experience mild side effects like headache or fatigue. For details on the side effects, review the handout specific to medication you take.
In rare instances, providers may recommend the addition of the medication ribavirin for more difficult cases of hepatitis C. Ribavirin may cause additional side effects such as fatigue, shortness of breath, cough, anemia, or rash. Patients who receive ribavirin may need more frequent monitoring for side effects as well as adjustment of the dose if side effects are experienced. For detailed information on ribavirin, patients should review the ribavirin handout.
Hepatitis C can cause scarring of the liver leading to cirrhosis and liver cancer. Other conditions have also been linked to hepatitis C and are known as extra-hepatic manifestations of hepatitis C. They include diabetes mellitus, arthritis, hypothyroid, and aplastic anemia among other conditions. Talk to your provider for more information.
If a person eats a balanced diet, they will normally get enough vitamins and minerals. People with liver disease should avoid taking large amounts of supplements or "mega-vitamins." This is because the liver has to do extra work to process them. Your provider may put you on a general multivitamin without iron.
Taking too many vitamin and mineral supplements may do more harm than good to a damaged liver.
- Avoid taking too much vitamin A.
- Do not take protein or amino acid supplements.
- Avoid iron supplements unless your doctor prescribes them. Excess iron can build up in the liver and speed up damage.
- If you have cirrhosis and your liver is not working, you may have to avoid substances such as steroids, acetaminophen, birth control pills, cortisone, barbiturates, and many other drugs.
Herbal treatments are not regulated by the FDA. They have not been proven to be effective. In some cases, they have caused liver failure. Remember to always tell your health care provider if you are taking any herbs or even vitamin supplements.
Herbs that harm the liver include:
- Kava Kava
- Life Root
- Mate tea
- Hemp Agrimony
- Senna Skullcap
- Colt's foot
- Dusty Miller
- Gordolobo tea
- Nutmeg (large amounts)