Hepatitis C Group Education Class
SLIDE 1: Welcome to the Hepatitis C Education Class
Welcome to our hepatitis C group education class. We are going to spend the next hour talking about hepatitis C. You were referred here by one of your health providers in the VA, either because you have hepatitis C infection or because you had a positive test for hepatitis C at some time in the past. We will discuss the difference between the two later in the class.
SLIDE 2: Topics of the Class
Today we'll be talking about what the liver is and how it works; The different types of hepatitis; What hepatitis C is, how people get it, and how they don't get it; What you can do to take care of your liver if you have hepatitis C; and How hepatitis C can be treated.
Later, when your provider sees you in clinic, he or she will find out how much hepatitis C is affecting your liver, and then talk to you about treatment options for your hepatitis C. This class should help you understand what is involved.
SLIDE 3: What is the Liver?
Let's talk a bit about your liver.
You have only one liver, and it is located on the right side of your abdomen. Your liver has many important jobs. The liver breaks down anything we take in, such as prescription drugs, street drugs, alcohol, or caffeine. Our bodies naturally produce some toxic chemicals or poisons, and those are also broken down by the liver. In this way the liver acts as a filter to clean your blood.
SLIDE 4: The Liver is a Factory
You can also think of the liver as a factory. It turns proteins and sugars into most of the things that your body needs. The liver stores vitamins, hormones, cholesterol, and minerals. Your liver then lets go of these chemicals and nutrients into your bloodstream when your body needs them.
When the liver does not work well, you can get very sick, or even die if your liver stops working altogether. Your liver may not work as well as it should if you have hepatitis.
Some people with liver problems can have a swollen liver. Others may have severe scarring or a shrunken liver. When your provider sees you in clinic, he or she will feel your liver to find out if your liver is shrunken, hard, or swollen.
SLIDE 5: What is Hepatitis?
Now I want to talk a little bit about the word, "hepatitis." Hepatitis means inflammation or irritation of the liver. Many things can cause this, and hepatitis C is just one of them. If you have hepatitis C, you need to be very careful not to do things that might also irritate your liver.
Inflammation of the liver can be caused by other viruses, such as hepatitis A and hepatitis B. Alcohol irritates the liver also, even in someone who doesn't have any other liver problems. If you have hepatitis C, any alcohol use could be harmful to your liver.
SLIDE 6: What Are Liver Enzymes?
Over-the-counter drugs, prescription and street drugs can also cause irritation or inflammation of the liver. We know this has happened when certain chemical levels from your liver are high, as shown in your blood tests. These chemicals are called "enzymes." What happens is that when something is bugging your the liver, like a virus or medications, the cells get damaged. The liver enzymes that are in the liver cells come out and get released into the blood stream. Then when we measure your blood work, the liver enzyme values are higher than normal. If your doctor starts you on a certain medication, he or she may need to monitor your blood chemistry to make sure it is not causing further harm to your liver.
SLIDE 7: Hepatitis A
Let's first talk about hepatitis A and B. Even though hepatitis A and B are common in the United States, more Americans are infected with hepatitis C. It is important for you to understand how hepatitis C is different from other types of hepatitis.
Hepatitis A and B and C are different viruses. A common question is, "If I've got hepatitis C, can I get either hepatitis A or B?" The answer is, "yes". That is because they are spread in different ways and affect your liver in different ways. But all types of hepatitis can harm your liver.
Now let's talk about hepatitis A. If you hear about people getting hepatitis from a visit to a restaurant, or after a picnic, it is probably hepatitis A. People get hepatitis A when human bodily waste comes in contact with food or water. This virus is spread through what is called the fecal/oral route. In other words, it is spread through unclean food and dirty water.
With hepatitis A, you can get sick right away. You may feel sick or tired for a month or so, but then your body gets rid of it, just like it would a cold or flu. The hepatitis A virus does not result in a chronic, or long-term, infection. A small number of people get very ill from hepatitis A.
If you have hepatitis C, we want you to be vaccinated against hepatitis A. That's because if you have hepatitis C and you get hepatitis A, you have a higher chance of getting much more sick from it. So, make sure that if you have hepatitis C, you ask your provider if you need to be vaccinated for hepatitis A.
SLIDE 8: Hepatitis B
Hepatitis B is a different virus, but it behaves a little bit more like hepatitis C than hepatitis A. It is spread like hepatitis C through blood-to-blood contact, such as blood transfusions, or by people who share needles. Hepatitis B is also fairly easy to spread through sexual contact, and is much easier to get than hepatitis C through sexual contact.
In most people, hepatitis B does not turn into a long-term condition, or what we call a chronic infection. This does happen in a few people, though. If you have hepatitis C, you should get tested for hepatitis B. There is a vaccine for hepatitis B. If you have never been exposed to hepatitis B, and you belong to a group at risk for hepatitis B such as health care workers, or if you have been involved in high-risk sexual behavior, or there is any chance of using and /or sharing needles for illegal drug use -- then you should be vaccinated.
Once you have come into contact with hepatitis B, and the virus is not active in your body any more, you cannot become infected with it again. You develop antibodies to it, which means that you are protected from it afterward. It's like what happens with chicken pox: once your body has it and gets rid of it, you can't catch it again.
SLIDE 9: Hepatitis C
We are here to talk about hepatitis C. This is a virus that we know has been around since the 1940's, because some was found in some old, stored, frozen blood. The virus was officially named as hepatitis C in 1989. Prior to this it was called "non-A/non-B hepatitis" because all we knew was that it was not hepatitis A or B. In 1992 a reliable blood test for hepatitis C was created, and now we can easily find out if someone has the virus. I'll talk more about testing for hepatitis C a little later.
This virus is spread through contaminated blood, that is, blood which has the hepatitis c virus in it that passes from one person to another. This has happened when people received blood transfusions with blood that was infected with hepatitis C. This rarely happens anymore because the blood is tested before it is transfused. This also can happen if you ever shared needles to inject drugs and one of the people you were sharing with had hepatitis C.
You may have been surprised when you first found out you had hepatitis C. That is because you can have hepatitis C and have no symptoms. You can also have hepatitis C for a long time and still feel fine. Most of you cannot get rid of the hepatitis C virus on your own, which means that for around 85% of people, hepatitis C is a chronic, or long-term, infection. And there is no vaccine against hepatitis C at this time. Let me repeat that: there is no vaccine for hepatitis C.
There is usually no way to tell for sure when you might have become infected with hepatitis C. You may have had hepatitis C for twenty or thirty years without realizing it. Although hepatitis C can sometimes have very mild symptoms, it is an illness that needs to be monitored because it can progress and cause liver problems. It stays in your body and you can give it to someone else no matter how healthy you feel.
SLIDE 10: Hepatitis C (cont'd)
About 4 million Americans have been exposed to hepatitis C and roughly 3 million have long-term infection (which we will talk about later). That is about 2% of the US population. About 30,000 more become infected each year. Worldwide, around 170 million people have hepatitis C.
SLIDE 11: Who Should Be Tested for Hepatitis C?
Who should be tested for hepatitis C? The answer is: anybody who has any of the risk factors for hepatitis C or has ever had a test that shows high levels of liver enzymes.
SLIDE 12: How Do People Become Infected With Hepatitis C? (High Risk)
There are two big risk factors for hepatitis C: Blood transfusion before 1992 and injection drug use. Anybody who got a blood transfusion before 1992 should be tested, even if they feel great and look great. Also, anyone who received other blood products, like platelets or plasma, before 1987 should be tested. Since 1992, the blood supply is thoroughly tested for hepatitis C and recent blood transfusions are not a risk factor.
The other big risk factor is ever having used needles to inject drugs, even just once. It does not matter how often someone used or how long ago they used, or even if they're sure they never shared a needle or other equipment. Injection drug use is the cause of around 60% of all new hepatitis C infections. So, if you've ever used injection drugs, you need to be tested.
SLIDE 13: How Do People Become Infected With Hepatitis C? (Low Risk)
There are several other ways to have blood-to-blood contact, but it's not clear how easy it is to transmit hepatitis C in each of these ways, or how often it happens. Let's go through them one-by-one.
Snorting cocaine or any other drugs is a risk factor for hepatitis C, because of the sharing of straws or equipment that goes from person to person. Tiny drops of blood from the nasal passages can remain on the straw used to snort the drug and transmit the virus to another person that way.
Work-related blood-to-blood contact can be a risk factor, such as needle sticks for someone who is a healthcare worker, or someone in the military who came in contact with blood from injured or wounded personnel.
Body piercing, tattooing and acupuncture are also risk factors. Needles can have hepatitis C virus if they haven't been cleaned between customers. Body piercing or tattooing is more likely to be a risk factor for hepatitis C if it was done at an unlicensed parlor or somewhere that does not use good procedures to clean and sterilize equipment.
SLIDE 14: How Do People Become Infected With Hepatitis C? (Low Risk)
Are there other ways to get hepatitis C? If a mother has hepatitis C, she has about a 5% chance of giving it to her newborn. A father who has hepatitis C is no risk to the baby at all.
Nonsexual household contact, such as sharing razors or toothbrushes, is a possible way to spread hepatitis C. The virus may be spread by small amounts of blood on the blade or bristles.
Getting hepatitis C from sexual contact can happen, but it does not appear to happen very often. In a long-term, monogamous relationship, meaning more than five years or so, the chance of spreading hepatitis C to a spouse or partner is very low, less than 5%. At least one recent study has found NO risk of getting hepatitis C from sexual contact.
In about 10% of people with hepatitis C we are unable to identify a risk factor based on information they provide us with.
SLIDE 15: What About Sex
It may be that some people have gotten the virus by having sex. It is unclear at this time how frequently this occurs. We don't know all the facts about how hepatitis C is spread through sexual contact. However, here are some things to keep in mind.
If you have hepatitis C, and you have multiple sex partners, you should use a latex condom. If you are in a long-term monogamous relationship, you do not need to use a latex condom. The risk of spreading the virus to a long-term, monogamous partner is very low. We do recommend that the partner get tested for hepatitis C at some point. Anyone in any kind of sexual relationship should talk with their partner about the fact that they have hepatitis C.
If you have hepatitis C it is possible that you could have been exposed to HIV and we recommend that all persons who have hepatitis C get tested for HIV. If you think there is any possibility you may have been exposed to HIV, you should always use a latex condom until you are absolutely certain you are negative for HIV.
SLIDE 16: Hepatitis C is NOT Spread By:
Now let's talk about how hepatitis C is not spread. [Advance to next animation] Saliva, sweat, and tears cannot spread the virus - only blood-to-blood contact spreads the virus. For this reason, casual contact does not spread hepatitis C. You cannot spread it by sneezing or coughing. You can eat off the same plate, drink from the same cup, or share utensils.
[Next animation] Common social contact like hugging, holding hands, or kissing does not spread the virus. Although people may have gotten hepatitis C from receiving blood that someone else donated, you cannot get it from actually donating blood.
You should not change your work, school, or social activities because of your hepatitis C. The only time you might have to change your behavior is if you are a healthcare worker and in a position where you could potentially spread hepatitis C to a patient. You can prepare and handle food for others safely if you have hepatitis C.
SLIDE 17: How Can You Prevent the Spread of Hepatitis C?
How can you avoid passing hepatitis C to other people? Much of this is common sense.
Cover all open wounds. Try not to get blood on other people or objects and tell people not to touch your blood. If you cut or injure yourself in public, try to clean up your own blood. If you cannot do this, tell whoever might come in contact with your blood that you have hepatitis C and so that they can protect themselves. Dispose of needles and other infected materials properly.
SLIDE 18: How Can You Prevent the Spread of Hepatitis C? (cont'd)
Do not share razors or toothbrushes or other articles that may have blood on them. You should tell all healthcare providers that you have hepatitis C. Do not donate blood. Finally, if you're not in a long-term monogamous relationship, it is a good idea to use condoms when having sex.
SLIDE 19: How Will You Know if You Have Hepatitis C?
A lot of people are very surprised to find out they've got hepatitis C because it cannot be diagnosed based on how someone feels. They feel great. You may not have any symptoms. The diagnosis of hepatitis C is made through a simple blood test to look for the virus in your blood.
If you do have symptoms, they may include feeling tired, discomfort in the upper right side of your abdomen, loss of appetite, muscle aches and joint aches, depression and trouble sleeping.
SLIDE 20: How is Hepatitis C Diagnosed?
Let's talk more about how your provider found out about your hepatitis C. As we discussed, to see if you have hepatitis C, your provider tested some of your blood for the antibodies your body makes to fight the virus. This is called the hepatitis C antibody test, which tells us if you've ever been exposed to the hepatitis C virus. If you have these antibodies, the next step is to test for the actual hepatitis C virus with what's called a PCR test. This tells us if you currently have the hepatitis C virus in your blood.
We talked about liver enzymes and liver function tests, or LFTs. These are blood tests that measure how much irritation there is in your liver. Most people with hepatitis C have high levels of liver enzymes at one time or another. But this doesn't give us any real idea about what's going on in the liver. People's liver enzymes can go up and down all the time. And just because your liver enzymes drop from 120 to 60 does not mean your liver is not damaged by hepatitis C.
SLIDE 21: What is Your Hepatitis C Genotype?
There is another hepatitis C test I will mention now, called the Hepatitis C Genotype test. However, this is something you will discuss with your provider during your appointment with them. Some of you may have had this test already, but many of you probably have not. Genotype refers to the genetic make-up of an organism or a virus. Not only are there different types of hepatitis (hep A, hep B, etc.), there are different strains, or types of hepatitis C. A simple way to think about this might be: if the hepatitis C virus is a dog, then the hepatitis C genotypes represent different breeds of dog.
There are at least 6 distinct hepatitis C genotypes identified. Genotype 1 is the most common genotype seen in the United States. Some genotypes respond better to treatment than others. Unfortunately, genotype 1 is the hardest to treat, in other words, your chances of getting rid of a genotype 1 virus are less than if you had genotype 2 or 3.
SLIDE 22: Why Should You Be Concerned About Hepatitis C?
Why should you be concerned about hepatitis C? The virus itself is not immediately dangerous after you get over the beginning, or acute, stage of the infection. But long-term, or chronic, hepatitis C has the potential to cause some serious problems over time for some people. These potential problems are fibrosis, cirrhosis, advanced liver disease leading to liver failure, and liver cancer. We will discuss each of these now.
SLIDE 23: Fibrosis
So what could the hepatitis C virus be doing to your liver that you don't know about? The first thing we are worried about is what's called "fibrosis," or scarring of the liver. This scarring is caused by anything that damages or irritates the liver (including hepatitis C). Fibrosis is the first stage of liver scarring, which for some people leads to a more serious problem called "cirrhosis."
SLIDE 24: Cirrhosis
Cirrhosis is severe scarring of the liver. A lot of people think cirrhosis only has to do with alcohol. Cirrhosis can be caused by alcohol, but it can also be caused by anything that damages the liver after years of irritation (including hepatitis C or alcohol or the combination of both). Cirrhosis is a condition that should be evaluated and treated by your provider. You may not have any symptoms from cirrhosis for a long time; on the other hand, you may have symptoms from your liver not working very well.
We don't have any way of predicting who is going to get cirrhosis. Heavy alcohol use, and having the hepatitis C virus for a long time - like 20 to 30 years, increases the chance of having cirrhosis. Men are also at higher risk for cirrhosis than women. Cirrhosis does not happen overnight. It takes many years to develop.
The important message here is that 80%, or 4 out of 5 people, with chronic hepatitis C are not going to develop cirrhosis in their lifetime. That means that many people with hepatitis C who take good care of their bodies will live long and healthy lives.
SLIDE 25: Advanced Liver Disease
Long-term advanced liver disease results if you have a lot of liver scarring and develop a bad case of cirrhosis. Another name for this is "end-stage" liver disease. Symptoms are fatigue, difficulty thinking clearly or concentrating, yellowing of the skin, swelling, fluid in the abdomen, bleeding from the digestive tract which can cause you to pass blood in your stools or vomit blood, and poor blood clotting.
SLIDE 26: Hepatocellular Carcinoma
A small number of people with hepatitis C, about 2 out of 100, develop liver cancer. Most often this is found to be a cancer called hepatocellular carcinoma, which accounts for 80 - 90% of all liver cancers. Chronic hepatitis C and cirrhosis increases the risk of getting this cancer. We will talk more about how your doctor can find this kind of liver cancer. It's treated with surgery, medications or liver transplantation.
SLIDE 27: Liver Transplant
When your liver becomes so damaged that it begins to stop working, liver transplantation may be an option. About half of all U. S. liver transplants are due to hepatitis C. But liver transplants are very rare and only for people who are in danger of dying from liver failure. So for each individual person with hepatitis C, the chance of needing a liver transplant in your lifetime is really very low.
The best way to avoid needing a liver transplant is to take good care of the one you have, which includes not drinking alcohol.
SLIDE 28: What Happens to People With Hepatitis C Virus?
A common question is: "What happens to people, long-term, who have hepatitis C"? This slide is to help explain that.
Let's start by thinking about 100 people with hepatitis C.
For every 100 people with hepatitis C, 15 will not develop chronic, or long-term, disease. Somehow, these people's bodies are able to get rid of the virus on their own. We don't know exactly why this happens, but it might be that their immune system is able to kill the virus soon after they are exposed to hepatitis C. This happens more often in women and children than in men.
Most people, however, 85 out of our 100, do get chronic hepatitis C. In some of these people, the virus causes damage to their liver. However, chronic hepatitis C does not cause liver damage in everyone who has it.
We know that only about 17 out of 100 people with hepatitis C have severe liver damage and develop cirrhosis, or scarring of the liver, in their lifetime. People who get cirrhosis could start to have liver problems.
Patients with cirrhosis from hepatitis C have a higher risk for liver cancer, however very few people (only 2 out of our 100) will develop liver cancer.
SLIDE 29: How Will You Know if You Have Problems from Hepatitis C?
The best procedure we have to assess your hepatitis C is a liver biopsy. It is the only way to determine the level of scarring in the liver or how much the liver has been damaged. This is a very safe procedure with small risk of complications.
We want people off street drugs and alcohol before we perform a liver biopsy. If we get a liver biopsy of somebody who has been drinking recently, it is going to be hard to tell how much of the swelling or irritation in the liver is really hepatitis C, and how much is from the alcohol.
A liver biopsy is a very safe procedure where a thin needle is inserted through your skin into your liver and catches a few cells for the lab to look at under a microscope. There are very few side effects. About 1/3 of the people have some pain afterwards, but most people do well. Some patients have a lot of anxiety about whether or not to get a liver biopsy, but most people do fine with the procedure.
SLIDE 30: What About Alcohol?
What about alcohol? I'm going to show you some circles here to show the effect that drinking and not drinking alcohol has on the liver. This small circle is the chance a person has for developing cirrhosis IF they do not have hepatitis C and they do not drink. As you can see the circle is very small. Everything else in the slide relates to this small circle. [Advance to next animation] A person who has hepatitis C and who does not drink alcohol is 9 times more likely to develop cirrhosis than this first person who does not have hepatitis C and does not drink alcohol. [Next animation] Now a person who does NOT have hepatitis C but drinks large amounts of alcohol is 15 times more likely to develop cirrhosis than the first person we talked about. [Next animation] However, a person who has hepatitis C and drinks heavily is 147 times more likely to develop cirrhosis than a non-drinker who does not have the disease. Any questions about this slide?
SLIDE 31: Effect of Alcohol on Liver Scarring
Here is another way to show how alcohol and hepatitis C can lead to cirrhosis. This slide shows the effect that alcohol has on fibrosis, or scarring of the liver. We just talked about what a liver biopsy is. After we take a sample of your liver tissue, we can score it as to how much scarring we see. The higher the number, the more scarring there is in your liver. So here, a zero means no scarring, a 3 means a lot of scarring, and a 4 means we've found cirrhosis of the liver.
What this graph shows is how, over time, heavy alcohol use increases the rate of scarring in your liver. The yellow line represents people with hepatitis C who either drink lightly or do not drink at all. On average, even up to 40 years of infection, these patients only progress to moderate liver scarring. Heavy drinkers - those who drink 5 or more drinks per day - are shown by this red line, and they develop scar tissue in their liver much quicker. After about 25 years of infection, they have more than twice the scarring of light or non-drinkers, and after 40 years of infection, most heavy drinkers have developed cirrhosis. So the point of this slide is that by stopping drinking, or perhaps even by limiting the amount you drink, you can have a direct effect on keeping your liver healthy in the long run.
SLIDE 32: With Hepatitis C, You Should:
So what should you do if you have hepatitis C?
Most important, avoid alcohol! As the last slide showed, drinking alcohol increases your chances of cirrhosis. Consult with your provider if you have other questions about drinking alcohol. Remember, we do not know if there is a safe amount of alcohol for patients with liver disease - and since it, too, can cause swelling and irritation of the liver, we recommend not drinking any amount of alcohol.
Besides the fact that alcohol can damage your liver, you should start avoiding alcohol now just in case you do need a liver transplant at some time in the future. The number of liver organs available for transplant is low compared to the number of people who need them, so patients who are selected for liver transplant are usually the ones thought to have the best chance of success with the transplant. A hepatitis C patient who does not drink or smoke, who regularly makes all of their scheduled medical appointments, and who has a good social support network in place is more likely to be approved for a liver transplant than someone who does not.
Also, be careful with all medications, including over-the-counter and herbal medications.
Tell all health care providers that you have hepatitis C.
SLIDE 33: Hepatitis C & HIV Co-Infection
This is a good time to mention some of the differences between hepatitis C and HIV. Some patients have both HIV and hepatitis C infection. These are both viruses. They are spread in similar ways, but HIV is a very different disease from hepatitis C, and there are some important differences you should know about:
For one, we know that HIV is spread both through blood and through sexual contact. The HIV virus is present in semen and vaginal secretions. Hepatitis C can only be spread through blood, and this is why the chance of spreading hepatitis C by sexual contact is very low compared to HIV.
HIV can be a more life-threatening disease than hepatitis C because HIV breaks down your immune system and makes it hard to fight off infection. Hepatitis C, however, does almost all of its damage to your liver, and as we've discussed, there are things you can do to protect your liver.
We now have some very effective treatments for HIV, which can slow down the disease and prevent people from developing AIDS. However, there is no cure for HIV. There is a possible cure for hepatitis C, which we will talk about in a minute, but the problem with the cure is that it is not effective in all patients. I will explain this more shortly.
What's the bottom line? If you have hepatitis C, you should also get tested for HIV. Because there are similar risk factors for getting these viruses, just to be safe, we should make sure you do not have HIV infection as well.
SLIDE 34: Those With Hepatitis C Should
Other things you can do:
Take care not to spread hepatitis C to others.
Talk to your health care provider about being vaccinated for hepatitis A and hepatitis B
Get tested for HIV
Maintain a healthy body weight
See a hepatitis C specialist to discuss treatment and find out if it is an option for you.
SLIDE 35: What Medications to Avoid?
For people with hepatitis C, there are things to keep in mind about over-the-counter medications.
Occasional use of low-dose acetaminophen, commonly known as Tylenol, is OK. A general rule is to take half the recommended dose on the bottle for Tylenol. It is also OK to use Ibuprofen, commonly known as Motrin or Advil if you do not have cirrhosis. If you do have cirrhosis, you should not take Motrin or Advil. Regular aspirin, such as Bayer, also is fine if it doesn't bother your stomach.
SLIDE 36: What About Vitamins and Herbs?
Many patients ask about iron supplements or tablets. People with hepatitis C should not take iron supplements. This is because iron might speed up the process of liver scarring, at least if it is taken in large doses. However, iron that you would get in a normal meal is safe. Also, if your provider has told you to take iron tablets for other health reasons, then it's OK - as long as your provider knows you have hepatitis C.
Many patients also ask about milk thistle, which is an herbal medication. Many patients take milk thistle, and it is probably safe, but it has not been shown to improve hepatitis C liver disease. Some people think that milk thistle could reduce swelling or irritation in the liver, but we don't know this for sure. If you choose to try herbal remedies, keep in mind that U.S. law does not require testing of the quality of these products, so you should be very cautious. And since there is not a lot of proof that they are effective, you might be throwing your money away.
SLIDE 37: Treatment of Chronic Hepatitis C
Now, let's talk more about the treatments for chronic hepatitis C.
SLIDE 38: Goals of Treatment
Here we will talk about what is called "anti-viral" treatment for hepatitis C because the goal of treatment is to slow or stop liver damage by eliminating the hepatitis C virus from the blood.
SLIDE 39: What Treatment is Available?
So, what treatments are available for hepatitis C? We generally use two different types of medication for treatment: interferon and ribavirin.
What does interferon do? To put it simply, interferon boosts your immune system. It is taken as an injection, like an insulin shot. Your provider would show you how to do it yourself. Standard interferon is taken three times a week.
Today the most common kind of interferon used is called "pegylated" interferon. This is an improved type of interferon and longer lasting than older versions, so one injection lasts a whole week. You only have to take one shot a week instead of three.
A second medicine that is used to treat hepatitis C is called ribavirin. Ribavirin is a pill that's taken twice a day, every day, for the full length of treatment. When ribavirin pills are taken with interferon -- this is called "combination therapy." When interferon is taken alone, it is called "monotherapy."
SLIDE 40: Does Treatment Work?
The big question is: does treatment work?
[next animation] Until 1998, providers were using just standard interferon (3 times a week) alone, and the chance of getting rid of hepatitis C was poor, only 10 to 15%. Understandably, interferon treatment was not very popular.
[next] Then providers started adding the ribavirin pills to the interferon injections. The response rate improved to a 40% chance of getting rid of the hepatitis C.
[next] The chance of getting rid of hepatitis C using pegylated interferon alone, without ribavirin, is about the same as with standard interferon and ribavirin, 40%.
[next] By far the best option for treatment is combination therapy using pegylated interferon plus ribavirin pills. This has a response rate of about 50%. However, the response rates can vary depending on other things, such as how much damage has been done to your liver and the strain of virus, or genotype, that you have. Your provider will discuss this with you at your clinic visit.
SLIDE 41: During Treatment
There are some other things you should know about treatment for hepatitis C. Medications are taken for either 6 or 12 months. Blood testing is required throughout the treatment to watch for potential side effects of the medications. Your provider will want to see you regularly, probably at least once a month, and they will need to have a reliable way to contact you during your treatment. Also, interferon needs to be kept refrigerated.
SLIDE 42: Side Effects of Interferon & Ribavirin
Unfortunately, interferon and ribavirin have a long list of possible side effects, and we'll talk about the major ones here today.
The most common side effect of treatment is flu-like symptoms. Many people describe interferon treatment as feeling like they have a bad flu. The flu-like symptoms tend to be worse for the first two days or so after an injection, then they get better as the week goes on. Tiredness, headache, muscle aches, joint aches, fever, and chills are common. Fatigue tends to affect people most of the time they are on treatment.
Other possible side effects of interferon include depression, difficulty sleeping, difficulty concentrating, and irritability. The most common of these is depression. Your health care team will work together to help you through treatment and deal with these symptoms if they become a problem.
SLIDE 43: Side Effects of Interferon & Ribavirin (Less Common)
Other side effects that may occur include: upset stomach, diarrhea, decreased white or red blood cell counts, and skin reactions to the shots.
[next animation] Later in treatment, some people also experience hair loss, weight loss, or thyroid problems. The hair loss is not permanent. Sometimes the thyroid may not be normal again. Some patients may need to take thyroid medication for the rest of their life after interferon treatment, but this is very rare.
SLIDE 44: Disadvantages of Treatment
Interferon therapy is not for everyone. [next animation] Side effects may prevent some people from starting or finishing treatment.
[next animation] Treatment can also be risky for patients with other health problems, such as depression, diabetes, heart disease, or thyroid disease. If somebody has diabetes or thyroid disease, we need to have their blood sugars under control before we put them on treatment because the interferon can boost your blood sugar level. If somebody has heart disease, history of a bypass surgery or a heart attack, then often we cannot use the ribavirin pills.
[next animation] Patients with severe or poorly controlled mental health problems cannot be safely treated. This is because the side effects of the medication can greatly worsen a person's quality of life, or even make them a danger to themselves or others, if they are already having difficulty with daily functioning due to depression, bipolar illness, post-traumatic stress disorder, or other psychological problems.
[next animation] The ribavirin pills can cause birth defects if either parent is taking the medicine. Patients taking ribavirin need to use two forms of birth control if there is any chance of getting pregnant. No attempts to conceive should be made during treatment or for six months after.
SLIDE 45: Plan & Commit to Your Therapy
Patients on hepatitis C treatment need to plan and commit to their therapy. Antiviral treatment for hepatitis C is something that should be taken very seriously. In many ways it is like starting chemotherapy for cancer. Not only is the medication itself very expensive, the course of treatment can be very disruptive to people's lives. If you start medication before you're psychologically and emotionally ready for the process, it may be more difficult for you to continue taking your medicine consistently. You and your provider will have to think a lot about your individual case and life situation before starting treatment.
Since antiviral therapy can keep some people from working, it is important that you have a plan for meeting your needs if you are unable to work. Social support networks are important so people can help take care of things for you if you don't have the energy to do them yourself. If you have some major life events coming up, such as a surgery, a long trip, or a wedding or other important family event, then you may want to put off treatment until that is over.
Providers want to offer antiviral therapy to patients who have the best chance of staying on therapy and having a viral response to treatment. Not taking your medication when you're supposed to may affect your response to treatment. The best advice we can give is to make and keep your appointments with your provider, and follow his or her advice and prescriptions.
We encourage you to write your questions down, and bring them to your provider at your next appointment. You might also consider starting a diary of your problems and medications.
SLIDE 46: Complementary Therapies
There are some other things that some patients find helpful. These will not cure your hepatitis C, but they may make you feel more comfortable either on or off antiviral treatment, or they may help you reduce your overall stress level. Aromatherapy is based on the idea that certain smells can change the way you feel. People use it to reduce stress or to help with fatigue. It may help cope with side effects of hepatitis C treatment. Massage therapy helps people relax and can also help reduce muscle pain, back pain, headaches, and soreness. Meditation and visualization are common tools people use to cope with pain and stress. Yoga involves an ancient set of exercises that is often combined with meditation. It helps many people improve their fitness, reduce stress, and increase their flexibility. But be sure to consult with your doctor before you start doing yoga or other intense exercise.
SLIDE 47: Living With Hepatitis C
Finally, maintain a healthy life outlook and try not to let hepatitis C rule your life. We understand that your diagnosis can be distressing, especially if it is new for you. Just remember that many people have hepatitis C and most of them live long healthy lives.
SLIDE 48: Education & Resources About Hepatitis C
Additional information on hepatitis C can be found using these resources.
SLIDE 49: Acknowledgements
This presentation is a product of the VA Hepatitis C Resource Center Program and the National Hepatitis C Program Office, Veterans Health Administration, U.S. Department of Veterans Affairs.
SLIDE 50: Thank You for Attending Class
We hope what you have learned today has been helpful. Thank you very much for listening.