for Veterans and the Public
Treatment: Entire Lesson
Do you need to start drug therapy immediately?
Not necessarily. Your doctor may recommend certain lifestyle changes (such as following a healthy diet and avoiding alcohol) and "watchful waiting," instead of starting drug treatment immediately.
Two of the biggest decisions you and your doctor will need to make are whether you should start drug treatment and, if so, when to start it.
Talking with other important people in your life--such as your family members and close friends--also can be helpful during the decision-making process.
What is watchful waiting?
Watchful waiting doesn't mean that you will be doing nothing. Instead, it means that you and your doctor will carefully monitor the progression of your hepatitis C, keeping treatment with currently available medications in mind as an option. Newer medications which increase the chance an SVR (sustained virological response) are continuing to be developed and some are anticipated to be FDA approved as early as 2011 . Many patients with hepatitis C can defer treatment until these newer drugs are available, in order to have the highest likelihood of achieving an SVR when they do undergo treatment.
Watchful waiting and lifestyle changes for hepatitis C are aimed at doing 3 things:
- stopping or slowing down the damage to your liver
- keeping you feeling well and helping you to feel better
- monitoring the natural course of the liver before deciding if treatment is necessary
Good candidates for watchful waiting are:
- patients with mild liver disease in whom treatment is not needed at the current time
- patients in whom pegylated interferon and ribavirin could be particularly too risky in terms of side effects. For example, patients with serious heart, lung, kidney disease or cancer may have these medical issues as much more active and antiviral HCV treatment would be too risky
- patients who are ready for treatment but would potentially benefit from waiting until new drugs are available.
Watchful waiting involves the following:
- having liver enzyme blood tests once or twice a year
- having a liver biopsy every 3 to 5 years
- going to regular doctor appointments
- following your doctor's lifestyle recommendations such as alcohol or tobacco, because reducing further damage to your liver is crucial
- attaining or maintaining a healthy BMI
- minimizing risk of steatosis with good control of diabetes and lipids
What are the benefits of treatment?
If you and your doctor decide that you should begin taking medicines for your hepatitis C, the drugs are intended to do 3 things:
- remove (or clear) all the hepatitis C virus from your body permanently
- stop or slow down the damage to your liver
- reduce the risk of advancing liver to cirrhosis
Complete and permanent clearing of the hepatitis C virus from the blood does not happen in all patients. If this does not happen, there are still some ways that treatment can help you.
The treatment can:
- slow down the scarring and damage to your liver
- lower the amount of hepatitis C virus in your blood
- improve your overall well-being and quality of life
- lower your alanine aminotransferase (ALT) liver enzyme level
- control the effect of hepatitis C in other organ systems, such as kidney and skin
Drug treatments are not right for everyone. Only you and your doctor can decide if a certain treatment is right for you.
Who should consider treatment?
Only patients with hepatitis C in their blood (chronic hepatitis C infection) are considered for therapy. In general, doctors suggest treatment if you:
- have a liver biopsy that showed damage (usually a moderate amount of fibrosis or more)
- are motivated to undergo treatment
- are willing to comply with the necessary steps and tests and visits for treatment
- were very recently (acutely) infected with hepatitis C, within the past 6 months
- are coinfected with HIV or hepatitis B
If you want to start treatment for hepatitis C, speak with your VA doctor. It is a good idea to talk about any concerns you have before you start treatment. You and your doctor will decide if treatment is right for you and which medicines might work.
What treatments are effective?
There are two main types of treatment regimens for hepatitis C:
- Dual therapy: pegylated interferon and ribavirin
- Triple therapy: pegylated interferon and ribavirin PLUS either boceprevir or telaprevir
You will be given a treatment regimen based in large part on your genotype. Genotype refers to the "strain" of hepatitis C virus that a person has. There are six genotypes. In the United States, genotype 1 is the most common, followed by genotype 2 and 3.
- People with genotype 1 generally are given triple therapy.
- People with genotype 2 and 3 are given dual therapy.
Interferon is a medicine that helps your body's immune system to attack infected liver cells and to protect healthy liver cells from new infection. Pegylated interferon is taken by injection once a week.
Ribavirin is a medicine that can fight certain viruses, though, by itself, it does not work against hepatitis C. It is taken in pill form and in combination with pegylated interferon.
Boceprevir and telaprevir
Telaprevir and boceprevir are anti-viral drugs. They work directly on the hepatitis C virus itself to stop it from replicating. These drugs cannot be used together, and they each must be taken in combination with pegylated interferon and ribavirin.
How long does treatment last?
How long the treatment lasts depends not only on your genotype but on the severity of your liver disease, and how you respond to the treatment along the way. Dual therapy, for genotypes 2 and 3, generally lasts for 24 weeks.Triple therapy for genotype 1 can last from 36 to 48 weeks.
If the treatment is not working, or if you have too many side effects, your provider may stop treatment as early as 4 weeks. Treatment may also be stopped if you aren't following your treatment regimen, as directed--such as not showing up for doctor visits, or not taking your medications on time.
What are the side effects?
Almost all medicines have side effects, including medicines for hepatitis C. Side effects vary a lot from person to person. Most patients on hepatitis C treatment have side effects, such as fatigue and flulike symptoms. Some side effects go away and some of them last the whole time you are on treatment. (See the Side Effects Guide for more information.)
Can you work while on treatment?
Some patients keep a normal work schedule while they are on treatment. Others may have to cut down their work hours or stop working altogether. The side effects are different for every patient, so it is hard to say how much hepatitis C treatment will affect your work schedule.
Here are some work-related factors to consider before starting treatment:
- If your job is busier or more stressful during certain times of the year (for example, during the holidays), ask your doctor about beginning treatment at the start of a less busy period.
- You also might ask your employer about the possibility of lessening the number of hours you work or going on short-term medical disability leave. This is in case the drug therapy makes you feel worse than you expect and you need to take some time off.
- Learn about your rights in the workplace. The Americans with Disabilities Act (ADA) says that employers can't discriminate because of a person's disability (such as a physical illness). Depending upon your situation, the ADA may apply.
How successful is treatment?
Your response to treatment depends on several factors, such as what genotype you have, age, race, weight, extent of liver damage, amount of virus in the blood (viral load), whether you have HIV infection, and whether you were treated in the past and did not have a successful response. In general, all patients treated for the first time have around a 60-80% chance of being "cured."
Other factors can change how likely it is that treatment is successful.
What factors can affect outcomes?
Not everyone will have the same results from hepatitis C treatment. The following are some things that can affect how the treatment works:
|Viral load||This is the amount of virus in your blood. If you have lower levels of virus in your blood when you start treatment, you may have a better chance of getting rid of the virus. Having a high viral load does not mean you have worse liver damage but it is harder to get rid of the virus with treatment.|
|Iron||If you have less iron in your blood or in your liver cells, your treatment may work better. Iron levels can be checked with a blood test or a liver biopsy.|
|Ongoing use of alcohol||Studies have found that patients who continue to drink alcohol regularly during treatment have lower rates of clearing the virus.|
|Ethnicity||Studies in the United States have shown that African American patients have lower rates of clearing the virus than do Caucasian patients, though the reasons are not apparent. Other ethnic groups have not been studied as well, but there may be other differences in response rates among ethnic groups.|
|Length of infection||You may have a better chance of clearing the virus from your body if you haven't been infected with the hepatitis C virus for very long.|
|Adherence (taking medications as prescribed)||Adherence to prescribed medications can be challenging but is a very important part of making sure the treatment works. Studies have shown that patients who receive adequate doses of interferon and ribavirin have much higher rates of clearing the virus.|
|Obesity||A number of studies have shown that patients who are overweight have lower rates of clearing the virus. If you are overweight, losing some weight prior to treatment may make the medications more effective.|
|HIV coinfection||Studies of patients with HIV-HCV coinfection show that treatments have a much lower success rate in coinfected patients compared to HCV patients without HIV.|
Deciding on a treatment plan
If you are ready to start drug therapy, talk with your VA health care provider about which treatment plan is right for you.
Many things need to be considered before you begin treatment. Your doctor will need to know more about the amount of the virus in your blood (viral load) and the type of hepatitis C virus (genotype) that you have.
Here are some questions that you should discuss with your doctor:
- Do I need to start treatment?
- What is my genotype and how can it affect my treatment outcome?
- What is my viral load and how can it affect my treatment outcome?
- What kind of treatment should I receive?
- How long will treatment last?
- Do I have any other conditions that will complicate treatment?
- Should I be tested for hepatitis A and B?
- Do I need a liver biopsy?
- What medications should I avoid while I am on treatment?
- What precautions do I need to take while I am on treatment?
- How often will I have doctor appointments?
- What tests will I need to take?
- How will treatment affect my daily life? Will treatment affect my ability to work?
- What side effects will I have?
- Are there any long-term risks from treatment?
What do you need to know about the treatment?
You will have frequent lab tests while you are being treated with the medications.
These lab tests are done to make sure that the drugs are safe for you and also to find out if the treatment is working.
Your doctor will give you instructions.
Your VA doctor will give you instructions before you start treatment. It is important that you follow these instructions carefully, and that you understand the risks and side effects of the drugs.
Risk of birth defects
Ribavirin can cause serious birth defects, and you or your partner should not become pregnant while taking it. If you start taking ribavirin to treat your hepatitis C, you must use 2 effective forms of birth control, one for you and one for your partner. An example is a condom for the man, and a diaphragm or birth control pill for the woman. You must keep using this type of birth control during the whole time you are on combination treatment and for 6 months after your last dose.
The drugs boceprevir and telaprevir stop hormonal birth control from working, including:
- Birth control pills
- Vaginal rings
- Uterine implants
- Depo-Provera injections
If you start taking the drugs boceprevir and telaprevir to treat your hepatitis C, you must use 2 effective forms of "non-hormonal" birth control, one for you and one for your partner. For example: a barrier method (condoms or diaphragms) plus spermicidal jelly. You must keep using this type of birth control during the whole time you are on combination treatment and for 6 months after your last dose.
What are the different responses to treatment?
Patients who have never taken medications to treat their hepatitis C are called "treatment naïve."
For patients who have taken medications, there are 2 main types of response to treatment:
Sustained virological response
This means that the treatment worked while you were taking the medicine and continued to work even after you stopped taking it. Sustained virological response (SVR) means no virus is present in the blood 6 months after the medications have been stopped. Studies have shown that patients who achieve an SVR almost always have the virus undetectable (absent) for years, for as long as the studies have followed them.
- Rapid Virological Response
At 4 weeks into treatment if the virus is undetectable or has dropped 2 logs then this is a Rapid Virological Response. It is very likely that if a patient has an RVR that they will also have an SVR.
- Early Virological Response
At 12 weeks into treatment if the virus is undetectable or has dropped 2 logs then this is an Early Virological Response. It is very likely that if a patient has an RVR that they will also have an SVR
- End of Treatment Response
At the end of treatment (usually 24 or 48 weeks depending on planned course) if the virus is undetectable then this is a End of Treatment Virological Response. After the End of Treatment response, treatment is stopped and virus is measured for the next 6 months for any evidence of relapse.
The treatment worked to achieve no detectable virus while the medications were present, but after the drugs were stopped, the virus was found again in the bloodstream.. The medicine and your immune system were able to clear the virus for a time, but could not do so completely. When you stopped taking the medicine, the hepatitis C virus came back.
The treatment did not remove (or clear) the virus from your blood by 24 weeks and if it was continued did not clear the virus by 48 weeks.
What tests will your doctor run?
Laboratory tests help keep tabs on your health during treatment. You will have frequent lab tests while you are being treated.
Here are 2 lab tests that can be done to give some information about whether the treatment is working:
ALT level (alanine aminotransferase)
This test measures the amount (or level) of an enzyme called ALT that is made in liver cells. If liver cells are damaged or die, ALT leaks into the bloodstream. One goal of treatment is to bring high levels of ALT back to normal.
If the treatment is working, ALT levels often come down to normal. If the ALT level decreases quickly in the treatment process, this is a positive factor in the response to treatment.
Viral load (hepatitis C virus ribonucleic acid level or hepatitis C RNA level)
This test measures the amount of hepatitis C virus in your blood. Treatment for hepatitis C is aimed at reducing the viral load, and specifically at making it negative (undetectable). "Undetectable" means that no virus is currently present in your blood. Your doctor will check your viral load at different times during treatment. Studies have shown that if the amount of hepatitis C virus in your blood after 12 weeks of being on medications falls by 100-fold (eg, 1 million international units of virus goes down to 10,000 international units), the chance that the hepatitis C virus will be gone once you have finished your therapy goes up.
In addition to the ALT level and viral load tests, your doctor will look at your complete blood count (CBC). This includes your white blood cells, which may be affected by interferon treatment. If the level of your white blood cells drops below a certain point, your doctor may change your interferon dose. A CBC also measures your red blood cells, which may be affected by ribavirin. If your red blood cell and hemoglobin levels drop below a certain point, your doctor may change your ribavirin dose.
For more information, see Understanding Lab Tests.
What can you do to help the treatment work best?
Here are some things you can do to make sure that your hepatitis C treatment works best:
- Always follow your health care providers' advice, particularly the instructions on taking your medicine.
- Take good care of yourself. Eat well, drink 8 to 10 glasses of water each day, and try to get a full night's sleep.
- Learn about the hepatitis C medications you are taking. This includes special risks and warnings.
- Practice 2 forms of birth control while on ribavirin, and continue to use birth control for 6 months after the last dose of ribavirin before trying to conceive a child.
- Practice 2 forms of "non-hormonal" birth control while on boceprevir or telaprevir, and continue to use birth control for 6 months after the last dose of ribavirin before trying to conceive a child.
- Keep all your appointments with your doctor. If you have to cancel an appointment, call your doctor and schedule a new one as soon as possible.
- Write down your doctor's name and phone number. Carry this information with you at all times.
- Write the names and amounts of the medicines you are taking. Carry this information with you at all times.
- Check with your doctor before starting new medicines. This includes vitamins, supplements, herbal remedies, prescription drugs, or other over-the-counter drugs.
What if the virus was cleared from your blood?
Here are some things to consider after you've finished treatment, and the virus was cleared from your blood:
- Ask for liver function tests every 6 months or every year.
- Ask your doctor about a viral load test if your liver tests become abnormal.
It is likely that the hepatitis C virus is no longer in your blood. Data suggest that you will stay virus free indefinitely.
- Try to keep yourself healthy by:
- eating well
- not drinking alcohol or using drugs
- getting plenty of rest
- staying active and exercising
- Keep your appointments with your doctor and get regular checkups.
Will you stay negative?
If your viral test was negative 6 months after the end of treatment, will you stay negative? Doctors prefer not to call this a "cure," but if treatment is successful, it is felt that health risks from hepatitis C can be reduced dramatically.
Treatment for hepatitis C hasn't been available for very long, so doctors are just starting to understand the long-term effects.
What if the virus is still in your blood?
If you have finished your treatment, and it did not clear the hepatitis C virus from your blood, you may want to take a break for a while, continue watchful waiting, and potentially be retreated when new drugs become available.
Your decision will depend on several things, such as the results of your liver function tests and biopsy. Some people with less severe liver damage decide to wait until better treatments become available. Other people decide to try new drugs right away.
Keep in mind that, even if the treatment didn't get rid of the virus, it likely has improved the overall health of your liver.
Here are some things to consider after you've finished treatment, and the virus wasn't cleared from your blood:
- Talk with your doctor about other treatments.
- Ask for liver function tests every 6 months or every year.
- Think about having a liver biopsy every few years to check your liver's health.
- Ask about new clinical trials for hepatitis C treatments.
- Talk with your doctor about tests for liver cancer if you have scarring of the liver (cirrhosis).
- Try to keep yourself healthy by:
- eating well
- not drinking alcohol or using drugs
- getting plenty of rest
- staying active and exercising
- Keep your appointments with your doctor and get regular check-ups.
Everyone has a different experience with hepatitis C treatments. Side effects are different for everyone, and doctors can never predict how well a drug will work for a certain person.
It always helps to know as much as you can and to keep yourself healthy by eating well, getting plenty of rest, and not using alcohol or drugs that can damage your liver.
At all stages (before, during, and after treatment), talk with your health care provider to learn as much as possible about your disease and your treatment. Your doctor will give you advice after you finish treatment. You must understand that the risks and side effects of treatment may last even after you have finished treatment.
With support from your family, friends, and a doctor that you trust, you can have a better treatment experience.
If you have tried a treatment that didn't work, don't be discouraged. Every day, new and better treatments are becoming available as we learn more about hepatitis C.
Side effects overview
One of the most difficult things for people on hepatitis C therapy to deal with is the side effects caused by the interferon injections and ribavirin pills. For more information on hepatitis C treatment, see Treatment Decisions.
Side effects vary a lot from person to person. Some people will hardly notice that they are taking medications. Others will feel like they have a cold for much of the time on therapy, and sometimes they will feel even worse.
If you are on hepatitis C therapy:
- You need to be able to recognize and identify the side effects that you are having.
- You need to learn how to manage the side effects, including knowing when to ask your doctor for help.
- You need to know which side effects are serious, so that you can report them immediately to your health care provider.
Being educated about your treatment is important so that you can finish with good results and so that you can feel better sooner. To learn more about how to deal with treatment, you can click on each of the side effects on the right.
People getting treated for hepatitis C often find it difficult to sleep. The lack of sleep can lead to anxiety, irritability, and depression. What follows are tips for coping with each of these side effects.
Many people on interferon therapy have trouble sleeping. This happens because interferon injections stimulate (excite) certain areas of your body. Lack of sleep can make all side effects--including fatigue, short temper, depressed mood, and headaches--a lot worse. So just getting better sleep can improve the other side effects.
- Develop good sleep habits (don't read or watch TV in bed).
- Try to go to sleep and wake up at the same time every day.
- Keep afternoon naps short.
- Limit fluids at night to avoid having to go to the bathroom in the middle of the night.
- If ribavirin makes you "jittery," take your pills at 4 PM or 5 PM instead of right before bedtime.
- Close to bedtime, try to avoid large meals, too much exercise, tobacco, alcohol, and caffeine.
Many patients feel a little anxious when they are on interferon therapy. This is a side effect of the medications, especially the interferon. As with many of interferon's side effects, it can be hard to notice--it changes you without your realizing it. You may feel a little "jittery," or feel that your interactions with others are slightly "off."
- Try relaxation techniques (yoga, meditation, deep breathing).
- Remind yourself: "The doctor told me that the medications would make me feel anxious, so this is not really me... The medication is making me feel this way."
- Avoid stimulants such as caffeine in coffee and tea.
- Tell your provider if your symptoms are getting worse; your doctor may be able to give you medicine for some of your symptoms.
Most people taking interferon are more likely to get angry about things than they normally are. This can happen even to people who never seem to get angry about anything. You may find yourself yelling at people in traffic when that never happened to you before.
By being aware of a short temper, you can expect it and control it better. If your family members and close friends know you are on medications that can cause you to be mad about things, they will be more understanding.
- Try relaxation techniques (yoga, meditation, deep breathing).
- Take deep breaths and count to 10.
- Share your feelings with friends and family.
- Join a support group.
- If you are tired, depressed, or losing sleep, find ways to deal with those side effects too.
- Your job may make your temper worse, so try to arrange ways to make your work less stressful. For example, you might want to talk to your boss about flexible hours, if that would help.
Feeling down--depression or sadness
It's not unusual to feel "down" while you are on interferon. This is purely a side effect of the medication. Stopping the interferon will make these feelings go away within 1-2 weeks.
If you find that you're more than a little down--maybe you feel worthless or hopeless or have lost interest in your favorite activities--you could be depressed. Depression is a common side effect of interferon. It can be treated by either by changing how much interferon you take or by taking antidepressant medications. Be sure to always discuss medication changes with your VA health care provider.
- Do something you enjoy, such as reading a book, going to your favorite restaurant, or visiting a museum.
- Get involved with a support group.
- Spend time with supportive people, such as family members and friends.
- Talk with your doctor about treatments for depression, such as therapy or medicines.
- If you ever feel that you may harm yourself or are contemplating suicide, get help immediately- any hospital should be able to help you, or you can dial 911. Interferon causes these symptoms, and nothing is worth putting yourself in danger.
Hepatitis C drugs can cause fatigue, headaches, fever, and muscle aches. What follows are tips for dealing with each of these side effects.
Feeling tired (fatigued) is the number one side effect of interferon and ribavirin. You may feel like you have a cold.
Ribavirin also can make you feel tired, because it is harmful (toxic) to red blood cells. This can lead to low red blood counts, a condition called "anemia."
In rare cases, the thyroid gland (a gland in the neck that is involved in a lot of body functions) can fail to function right, leading to low thyroid levels. This condition is called "hypothyroidism," and it can make you feel tired, too. You can ask your VA health care provider more about this condition.
- Try going to sleep and waking up at the same time every day.
- Take a short nap after work.
- Get regular, moderate exercise.
- Eat healthy meals to maintain your weight.
- If fatigue is worse 1 to 2 days after injecting interferon, take 325 to 1,000 mg of Tylenol before your shot. (Talk with your doctor about this.)
Headaches can be a direct result of the interferon. They can also be due to anemia (low red blood cells) caused by ribavirin.
- Drink more fluids.
- Try to get plenty of sleep.
- Take a hot, relaxing bath.
- Lie down and rest in a quiet, dark room.
- Try to reduce your stress level.
- Check with your VA health care provider about taking Tylenol and/or ibuprofen.
- If you have a history of migraine headaches (a certain type of headache, which often comes with vision changes), talk to your health care provider about taking medications (such as Imitrex) for them.
Fever is usually caused by the interferon. The fever tends to be worse with the first few shots, and usually occurs within the first day or two after the shots.
Seek immediate medical attention if:
- your fever goes above 101ºF (38ºC), particularly for more than a day
- you also have chills or feel extremely weak
This is because high fever can be associated with infections that may need a specific treatment. Your health care providers will know whether this is the case.
- Check with your VA health care provider about taking Tylenol before your interferon shots. This can lessen the fever that the shots cause. You can also talk with your provider about taking Tylenol after your shots when you have fever.
- Drink plenty of liquids and try eating well to keep yourself hydrated during fever.
- Go to a health care provider if your temperature:
- is above 101ºF, unless it followed an interferon injection
- is above 101ºF repeatedly or lasts for more than 24-48 hours
Muscle and body aches
Muscle aches can result from inflammation (swelling) of the muscles due to interferon. Ribavirin also can cause muscle inflammation and dehydration and loss of fluid in your blood vessels, and this can lead to muscle aches. (Dehydration is partly what causes your muscles to ache after you exercise for a long time.)
- Check with your VA health care provider about taking Tylenol, aspirin, ibuprofen, Advil, Motrin, or Aleve for your body aches.
- Follow a moderate, low-impact exercise plan.
- Apply a warm, moist washcloth to areas that hurt.
- Take a hot bath.
- Drink a lot of fluids.
Mouth, stomach, and digestion
It's important to eat a good, healthy diet while you are on treatment and afterward, even if you want to lose a few pounds. Your body needs good nutrition and healthy foods to fight the hepatitis C infection and repair damage that it has caused over time. This can be difficult because treatment can cause problems with your mouth and stomach. What follows are tips for coping with these side effects.
Interferon treatment can cause you to lose your appetite. This can cause poor nutrition (not eating right), which can contribute to weakness and your not feeling well.
- Take a walk or do stretches before a meal. This may increase your appetite.
- Eat 5 or 6 small meals each day, instead of 3 large meals. For example, eat an 8:30 AM breakfast, 10 AM snack, 12:30 PM lunch, 3 PM snack, 5:30 PM dinner, and a 7:30 PM snack.
- Eat your favorite food, even if just a little bit.
- Drink homemade fruit shakes of nutrition supplements (such as Ensure and Carnation Instant Breakfast) instead of skipping a meal. Drink liquid supplements with a straw if you find that their smell makes them less appealing.
- Keep snacks handy, such as hard-boiled eggs, cheese, and peanut butter. Keep snacks that don't require refrigeration near your bed or by the television.
- Pack foods that don't need to be refrigerated for snacking when you are away from home.
- Stock up on frozen meals in single-portion packages. These are quick and easy to prepare.
- Try different food textures (add chopped nuts, seeds, or water chestnuts to dishes) to make eating more interesting.
- Watch cooking shows and keep cookbooks around.
- Make eating enjoyable--eat with others, eat in a pleasant place, light a candle.
- When possible, do not drink fluids with your meals. They can make you feel full sooner.
Bad taste in mouth
Interferon can cause a bitter or metallic taste in your mouth. Ribavirin can cause mouth sores and dehydration, which can make your mouth feel dry and have a bad taste.
- Tart food can "mask" a metallic taste. Drink orange, cranberry, and pineapple juice, and lemonade. Add vinegar, lemon juice, pickles, or relish to your food.
- Marinate meat, chicken, turkey, fish, or tofu in vinegar, wine, salad dressing, or soy sauce. Add fresh herbs, dried herbs, or condiments to your food (such as onion, garlic, chili powder, rosemary, thyme, basil, oregano, cumin, mustard, catsup, and mint). For example, try sweet and sour pork with pineapple.
- Eat cold food, such as sorbet, sherbet, fruit slushes, ice chips, or frozen yogurt to numb your taste buds. Eat frozen grapes, orange slices, or pieces of cantaloupe and watermelon. Or create frozen popsicles out of sports drinks.
- Chew lemon drops, zinc lozenges, mints, or gum, which can help get rid of bad or "off" tastes that linger after eating. (If you have diarrhea, go easy on your use of sugar-free candies and gum.)
- Eat dark chocolate.
- Rinse your mouth with tea, ginger ale, salted water, or water with baking soda before eating. This will help clear your taste buds.
- Use plastic utensils instead of metal utensils.
- Eat fresh or frozen foods instead of canned foods.
Dry mouth and thick saliva
Ribavirin kills red blood cells. As a result, you don't have as much blood in your blood vessels, and you get dehydrated. This can cause dry mouth or thick saliva.
- Use sugar-free candy or sourballs, popsicles, ice cubes, or sugarless chewing gum to moisten your mouth.
- Start and end each day with a glass of water.
- Moisten food with sauce, gravy, yogurt, or salad dressing.
- Dunk bread, crackers, and cookies in soup, milk, juice, or hot chocolate.
- Drink plenty of beverages, such as lemonade or tea with lemon.
- Rinse your mouth with club soda or warm, salted water.
- Keep fluids by your bed so you can drink during the night if you are thirsty.
- Ask your VA doctor about mouth rinses and other products to treat your dry mouth.
Sore mouth and sore throat
Ribavirin can cause you to have an allergic reaction that might show up as a rash on your skin. It can also show up as an irritation in your mouth and throat. If you normally get mouth ulcers, they may get worse while you are on treatment.
- Eat soft or pureed foods. Baby foods or toddler foods may be good substitutes.
- Drink nectars instead of juices.
- Drink instant breakfast formulas or milkshakes instead of eating solid food.
- Use a straw.
- Eat lukewarm or cool foods, not foods at hot temperatures.
- Gargle or rinse your mouth out often with warm, salted water.
- Talk to your doctor about a prescription for lidocaine mouthwash. It can ease discomfort from mouth sores.
- Try to stay away from:
- foods that are spicy, salty, acidic, or high in citrus content (such as oranges and grapefruits)
- rough food like dry toast, granola, and pretzels
- chili powder, cloves, curry, hot sauces, nutmeg, and pepper
- carbonated beverages (such as colas)
Nausea and vomiting
Nausea is a common side effect of hepatitis C therapy. It can be caused by both interferon and ribavirin. Vomiting repeatedly can lead to dehydration and chemical imbalances in your body. Tell your doctor if you vomit frequently, or if nausea and vomiting stop you from taking your ribavirin.
Quick Tips: Nausea and vomiting
What to try:
- Try the BRATT diet (bananas, rice, applesauce, tea, and toast).
- Eat small, snack-sized meals every 2 to 4 hours, instead of 2 to 3 big meals during the day.
- Take your ribavirin with food.
- Eat foods cold or at room temperature. Fruit or a sandwich with cold cuts or cheese is fine. Hot food can contribute to nausea and vomiting.
- If you've vomited, be sure to "refuel" your body with broth, carbonated drinks, juice, Jell-O, or popsicles.
- Leave dry crackers by your bed, and eat a few before getting up in the morning.
- Foods that may help your nausea and vomiting:
- Salty foods, such as crackers, pretzels, and unbuttered popcorn
- Dry foods, such as dry ready-to-eat cereal, crackers, melba toast, and cookies; keep these foods close to your bed or favorite chair so they are within easy reach
- Peppermint, chamomile, and ginger tea; they can calm the stomach
- Cold carbonated drinks such as ginger ale, 7-Up, and Sprite
- Talk to your VA health care provider about whether you should take medicine for your nausea.
What to avoid:
- Don't lie flat for at least 1 hour after you eat.
- Avoid smells and foods that trigger nausea (use boiling bags, microwave ovens, or covers for pots). Open the windows to decrease food odors when you are cooking.
- Avoid eating if nausea is extreme.
- Avoid very sweet foods and foods that are hot, spicy, strong-smelling, or greasy.
While you are on therapy, you may experience diarrhea at times. For some people, diarrhea can be the main side effect of treatment. It's important to replace lost fluids, which can lead to dehydration and weakness.
What to try:
- Try the BRATT diet (bananas, rice, applesauce, tea, and toast).
- To replace lost fluids, drink plenty of mild, clear liquids throughout the day. These include sports drinks (Gatorade, Powerade, All Sport), chicken or beef broth, herbal tea, or water. Drink liquids at room temperature.
- Eat foods high in soluble fiber. This kind of fiber can slow diarrhea by soaking up liquid. Foods high in soluble fiber include oatmeal, cream of wheat, grits, toast (not whole grain), bananas, rice, and applesauce. A tablespoon of Metamucil mixed with juice may also help.
- Try psyllium husk fiber bars, available in health food stores. Two bars eaten 1 hour before bedtime with a large glass of water can help.
- Eat small, frequent meals and snacks throughout the day.
- Drink and eat high-sodium foods, such as broth, soups, sports drinks, crackers, and pretzels.
- Choose foods and drinks high in potassium, a mineral that you lose with diarrhea. These include bananas, potatoes (without the skin), fish, chicken, and meat, and juices such as orange, apricot, mango and peach, V-8, and Gatorade.
- Drink at least 1 cup of liquid after each loose bowel movement.
- Ask your doctor about antidiarrheal medications such as Lomotil, Kaopectate, Imodium, and Pepto-Bismol.
What to avoid:
- Avoid greasy, fried, spicy, or very sweet foods.
- Limit drinks with caffeine, such as coffee and cola.
- Avoid dairy products (avoid for at least 3 days after symptoms resolve).
- Avoid food and drinks that may cause cramps or bloating, such as beans, cabbage, broccoli, brussels sprouts, onions, green peppers, and carbonated drinks.
- Limit use of sugar-free gums and candies made with sorbitol.
Skin and hair
Hepatitis C treatment can cause temporary hair loss, skin rashes, and injection site reactions. Here are ways to deal with these side effects.
About 1 of 3 patients on interferon loses hair while they are on therapy. The hair loss usually happens little by little, not in big patches (like it does during cancer chemotherapy). After you stop interferon, your hair will grow back slowly to its normal thickness.
- Wear caps or scarves.
- Use a wide-toothed comb.
- Don't pull on your hair or comb it a lot.
- Don't blow-dry, dye, perm, braid, or cornrow your hair.
Skin rashes, particularly on the arms and trunk (torso), often result from the ribavirin. These rashes tend to come and go during the course of the treatment.
- Take cool baths and use moisturizing soaps (such as Dove, Oil of Olay, and Cetaphil).
- Apply skin lotions (such as Aquaphor, Curel, Aveeno, and Absorbase).
- Use hydrocortisone cream as prescribed by your provider.
- If your scalp is dry, use shampoos with selenium.
- Protect your rash from sun exposure, which can make the rash worse.
- Avoid hot showers and baths. They can irritate the skin.
- If these lotions and creams don't work, talk to your doctor about oral medications.
Injection site reactions
Red, "blotchy" areas can appear around the site of your injection. Sometimes they will itch. They tend to get better over the course of several days.
- Apply a cold pack to the area.
- Use hydrocortisone cream for itching (ask your health care provider about this).
- Change the site of injection--from abdomen to thighs, or switch to the other side of the body.
Other side effects
Hepatitis C therapy sometimes can result in chest pain, shortness of breath, vision changes, and thyroid problems. Some of these side effects need to be promptly reported to your doctor. What follows are tips on dealing with each.
Chest pain is a fairly common side effect of therapy. Hepatitis C therapy affects your whole body--from muscles to joints, lung airways, and digestive system.
Your esophagus (food-swallowing tube), lung airways, chest muscles, ribs, and heart can produce different symptoms in the chest area. These can feel like chest pain.
But if you develop chest pain while on therapy, particularly if it is very noticeable, different from one you have had before, or mostly occurs when you are exerting yourself (eg, climbing a flight of stairs), you should seek medical attention. This is because chest pain can come from the heart, which can require specific treatment.
- Go to the emergency room so a doctor can make sure the pain isn't from a heart attack or serious lung problem.
Shortness of breath
When taking interferon and ribavirin, many patients will feel a little more short of breath than they usually do. This is a common side effect of therapy. It usually happens because of the low red blood cell counts (anemia) caused by ribavirin.
Shortness of breath can be scary, so if there are times when you find it difficult to catch your breath, you should seek prompt medical attention. Your doctor will want to be sure you don't have asthma, a lung infection, or other problems that require specific medical treatment.
- Take note of when and what activities you are doing when you become short of breath, so you can tell your provider.
- Check with your health care provider to make sure your shortness of breath isn't caused by a heart or lung problem.
Changes in your vision that cause you to not be able to see clearly are uncommon. If they do occur, however, they should be promptly reported to your doctor. Eye specialists will be able to look into your eyes and see if there are any problems.
- To help describe any vision changes to your doctor, try to remember when the symptoms occur (at night? in bright light? at certain times of the day?) and what they involve (blurry vision? inability to see in a part of one or both eyes? eye pain?).
- For dramatic visual changes (such as sudden poor vision or sudden change in vision in one eye), seek medical care within 24 hours.
Your thyroid is a gland in the front of your neck that is about the size of an apricot. It helps control many of the functions of your body. It affects your appetite, weight, energy level, digestion, and concentration, among other important functions.
Interferon can lead the thyroid gland to be overactive or underactive. This can have a big effect on how you feel. Most people do not have any problems with their thyroid from interferon, but you should tell your VA provider if you notice any big changes in how you feel. Rarely, changes in thyroid function can appear even after interferon and ribavirin treatment has been completed.
- Tell your provider about the side effects that you are noticing from interferon. Discuss whether any of these could be related to changes in how your thyroid gland is functioning. Your provider can then order blood tests, if necessary.
Your VA health care providers will look at your blood test results every 1-2 months while you are on treatment with interferon and ribavirin. They want to be sure that the medicines are not lowering your blood counts to unsafe levels. Blood tests also give your providers an idea of how well your treatments are working.
Following are some things that can be found by blood tests.
Low red blood cells
Ribavirin is harmful (toxic) to red blood cells and can damage them. Interferon leads to fewer red blood cells being produced. This results in low red blood cells, or "anemia." Anemia can make you feel tired.
- Your provider will tell you whether your red blood cell count is low and what can be done about this.
- Decreasing the ribavirin dose will help to improve anemia (your provider will advise you about this).
- Sometimes another injectable medication, Epogen (or Procrit), may be used to increase the number of red blood cells and bring them up to more normal levels.
Low white blood cells
Interferon slows your body's production of white blood cells. This leads to lower amounts of an important group of white blood cells called "neutrophils" (pronounced "noo-troh-fills"), which fight many different infections. Patients with low neutrophil counts are at risk for infections, such as pneumonia or skin infections.
- Your provider will tell you whether your white blood cell count is low and what can be done about this.
- Decreasing the interferon dose can help to improve the white blood cell count (your provider can advise you about this).
- Sometimes another injectable medication, Neupogen (or G-CSF), may be used to increase the number of white blood cells and bring them up to more normal levels.
Platelets (pronounced "playt-letts") are clusters of proteins that act like bricks to form blood clots. They are produced by cells in the bone marrow. Platelet counts often drop if you are on interferon and ribavirin therapy. This can put you at a higher risk for bleeding.
- Your provider will tell you whether your platelet count is low and what can be done about this.
- If you have a low platelet count, you should pay particular attention to bleeding. Nosebleeds and bruises are more common. If you are concerned that you are bleeding or can't stop bleeding from a cut, seek medical attention.
- Decreasing the interferon dose can help to improve the platelet count (your provider will advise you about this).
What is a clinical trial?
A clinical trial is a research program that tests a new medicine to see if it is safe and works well. When a new medicine (or drug) is first discovered, you cannot get it by prescription. Researchers must first test it in a laboratory with animals. Then, they must do a clinical trial in a hospital or clinic to test it in people. They test it to see if it is safe and to see how much of the medicine (or what dose) is enough to work.
The Food and Drug Administration (FDA) is a government agency that decides if a new drug is safe enough to give to patients by prescription. It looks at the results of the clinical trials to make this decision. Testing drugs for hepatitis C is very important, and clinical trials are a way to find new and better medicines. All medicines that you can now get for hepatitis C were first tested in clinical trials.
How do clinical trials work?
Clinical trials follow a set of rules called a protocol. The protocol says who can participate, how long the study is, and which tests need to be done.
Clinical trials are managed by doctors and are usually run by nurses or other health care professionals. The clinical trial staff will follow your progress closely and can help tell your regular doctor what is happening with your treatment.
Trials are also checked by an institutional review board (IRB). This is a group of people who reviews the clinical trial regularly to protect your rights, safety, and well-being.
When you are in a clinical trial, you may need to see the doctor more often and sometimes stay overnight in the hospital. This is because they want to check the effects of the medicine carefully. Because clinical trials are research, they will often test the real drug against a placebo (or sugar pill). Usually you will not know if you are taking the medicine or the placebo until the clinical trial is over.
How do I begin a clinical trial?
Before you start a clinical trial, you will go through a screening process. This is to make sure that it is safe for you to start taking the medicine. The staff will ask you about your health history, and you may have a blood test, urine test, or others (such as a physical exam or a heart test).
What is informed consent?
You will also go through a process called informed consent. The doctors and nurses will explain exactly what will happen during the clinical trial. They will answer your questions and tell you about the risks and benefits of the clinical trial. They will ask you to sign a document called a consent form. When you sign this form, you are saying that you understand what is going to happen and that you agree to participate. Even after you have started a clinical trial, you are free to quit at any time for any reason. Quitting early will not affect your medical care in the future.
Does it cost anything to participate?
No. It will not cost you anything because you are helping the researchers to test a new medicine. Sometimes you may even get extra money to pay for your time or travel.
Trials are paid for by government agencies, pharmaceutical (or drug) companies, individual doctors and hospitals, or clinics. Most hepatitis C clinical trials are paid for by the companies that make the drugs. The doctors and nurses will tell you who is paying for the study before you begin a trial.
How long do clinical trials last?
Clinical trials can last from a few weeks to several months. After the treatment is over, they will usually ask you to come back for some follow-up visits. The follow-up period may be as short as a few weeks or as long as six months and helps to make sure that you are safe.
What are the different types of clinical trials?
There are four different types of clinical trials: Phase I, Phase II, Phase III, and Phase IV.
- is the first time they have tried the drug in people
- tests for the drug's safety and helps find the right dose
- may ask for frequent tests or a stay in the hospital to check for safety and effectiveness
- lasts a fairly short time
- has a small number of patient volunteers
- happens when early studies show that the drug may work well to fight hepatitis C
- tests for safety and effective dose level
- lasts longer than Phase I trials
- tries to find out what kind of side effects you get with this medicine
- has several hundred patients
- happens if the drug worked well in Phase I and II
- compares standard treatments (medicines that you can already get by prescription) or sugar pills (placebos) with the new medicine
- may last longer than Phases I and II
- looks for ways to reduce the side effects and improve the quality of your life while you are taking the medicine
- is the last phase of study before a drug is sent to the FDA
- has many patients (sometimes thousands)
- happens when the drug is already available by prescription
- happens less often than other phases
- checks other safety issues and long-term side effects
- may be used to check higher or lower amounts (or doses) of the medicine
How long does the FDA take to approve a medication?
It usually takes about 10 years for a drug to be developed and approved for prescription. Many people would like to take the newest medicine as soon as it is proven to work. However, even after a drug has been successful in a Phase III trial, it still may take six to 12 months before that drug is approved for prescription.
Will I definitely be able to participate?
Not necessarily. Most clinical trials have eligibility criteria. These are rules about who can participate, based on health, age, and maybe other things. They are designed to keep you safe and to help you get the best results. If you do not meet these criteria, you will probably not be able to participate. If you do qualify for a trial and decide to participate, you should be willing to follow the guidelines of the study.
What are the benefits and risks?
Before you start a clinical trial, you should think about the positive and negative things that may happen.
- You may get frequent free checkups from hepatitis C specialists.
- You can get free medicine.
- You can get new medicine that is not yet available from your regular doctor and may work better than the old medicine.
- You may learn a lot about your hepatitis C disease and how to take care of yourself.
- You may help medical researchers to find better treatments for all patients with hepatitis C.
- You may have side effects from the medicine that you did not expect.
- You may have to have frequent office visits, blood tests, and other medical exams.
- You may not get better from the treatment.
How can I find out about participating in a clinical trial?
Many trials are being conducted at VA medical centers across the country. There are trials in all Phases, studying many different drugs. Ask your VA doctor about what trials may be appropriate for you.
The decision to participate in a clinical trial is an important personal choice. It is a good idea to know as much as possible about the trial before beginning. You may want to have a list of questions for the health care providers and study coordinators when you meet with them. You may also want to talk with your regular doctor, friends, and family to help you make your decision.
Overview of challenges for people in drug and alcohol recovery
Why is treatment for hepatitis C infection challenging?
Currently, combination therapy is the most effective treatment for hepatitis C. Combination therapy is when you take more than one medicine. Patients who are on combination therapy for hepatitis C take both ribavirin and interferon.
- Ribavirin comes in a pill that you swallow.
- Interferon is given as an injection (or shot).
Both interferon and ribavirin can cause side effects. In addition, since interferon is given as an injection, it may be uncomfortable for some people, especially people who are in recovery for injection drug use.
Side effects of hepatitis C treatment
Side effects may include the following:
- Feeling tired
- Having a fever and chills
- Feeling sick to your stomach (or nausea) or vomiting
- Not feeling hungry or eating less than usual
- Feeling anxious, irritable, or depressed
- Having headaches and muscle aches
- Losing your hair
- Not being able to sleep (or insomnia)
- Having dry, itchy and/or irritated skin, or rash
- Having problems with thyroid disease or diabetes
- Having shortness of breath
- Having chest pain
Managing side effects
Many people have a difficult time with the side effects of hepatitis C treatment. If you experience any of these side effects, talk to your doctor. Your doctor will be able to give you suggestions on how to deal with the side effects. Your doctor may also suggest prescription drugs to lessen your side effects and make you feel better.
If you feel that taking medicine for the side effects of anxiety, irritability, or depression contradicts your recovery program, speak with your doctor and support people. Some recovering addicts practice total abstinence from drugs that may alter mood or feelings. This may include medicines that your doctor might prescribe for interferon side effects, such as depression, anxiety, or irritability. Taking medicine for these side effects may not be right for you.
Tips for Managing Side Effects
- Talk with your doctor or nurse about whether you would benefit from talking with a social worker, psychologist, or other mental health professional to help you cope with the side effects of your hepatitis C treatment and your recovery.
- Talk openly about your feelings with your sponsor, fellowship, a family member, friend, or someone else you trust.
- Tell people close to you that you are taking medicine to treat hepatitis C that may affect your moods.
- Join a support group for people with liver disease.
- Avoid people, places, or things (called triggers) that can make you feel stressed.
- Try to avoid too much caffeine, sugar, and tobacco.
- Learn ways to relax. Meditate or breathe quietly. Go for a walk or do some other light exercise.
- Take care of your body. Eat healthy meals, get lots of sleep, and drink plenty of water.
Important Note: If you were prescribed medicines for a mental or emotional disorder prior to starting hepatitis C treatment, you should not skip or change the doses of your medicines without speaking with your doctor first.
Memories of drug- or alcohol-using days
Sometimes, the act of injecting interferon can bring up memories and feelings of your 'using' days. It might be difficult for you. Here are some tips to make taking interferon easier on you:
- Remind yourself that interferon is working to heal your liver from the damage caused by hepatitis C.
- Try not to isolate yourself while injecting interferon. It may be helpful to inject interferon around people you trust, such as family members.
- Talk openly about your feelings of injecting interferon with your sponsor, fellowship, and other people you trust.
- Remind yourself that being clean and sober is the best thing you can do to keep yourself healthy when you have hepatitis C.
- Get help managing side effects. Remember to talk with your doctor if you are experiencing any side effects from your hepatitis C treatment.
- Don't skip or change doses of interferon. Try to make the injections part of your schedule and routine.
People talk about their recovery
The following people talk about how they deal with their recovery and the side effects of hepatitis C treatment:
"The side effects from the interferon injections are similar to those of heroin withdrawal...the fever, the hot/itchy skin, and aching muscles and joints. For me, an attitude of gratitude has helped me immensely. I remind myself that I am taking treatment so I can have a normal life. I go to meetings."
"I was really having a hard time with the treatment. I was having a really bad depression. I couldn't even get out of bed in the morning. I talked to my doctor and he prescribed a medication for my depression. It has made it easier for me to deal with my treatment and focus on my recovery."
"I experience some depression on my therapy, but I feel that taking antidepressants contradicts my program. I take my commitment to NA's philosophy of total abstinence very seriously. Taking the side effects of hepatitis C therapy day-by-day helps me through some of the dark periods."
"I know a lot of people who are in my program with hepatitis C infection. I have talked to many members of my fellowship for support and advice on this disease."
Definitions of terms commonly used with viral hepatitis and related conditions.
- Hepatitis C Medications: A Review and Update for Patients
An overview of hepatitis C treatment, including information on the most recently approved drugs.
- Centers for Disease Control and Prevention: Viral Hepatitis
Information on all types of viral hepatitis from the CDC's National Center for Infectious Diseases. Site features related CDC guidelines and recommendations as well as training materials, slide sets, fact sheets, and key CDC hepatitis documents.
- Triple Therapy Workbooks
Detailed workbooks to guide patients through their treatment course with triple therapy--pegylated interferon, ribavirin and either boceprevir or telaprevir.
- Taking Your Hepatitis C Triple Therapy
One-page printable handouts for patients who are taking boceprevir or telaprevir--with tips on how and when to take the medications, and what to do if you miss a dose.
ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. Site gives information about a trial's purpose, who may participate, locations, and phone numbers for more details.
Treatment Side Effects
- Managing Side Effects of Hepatitis C Treatment
A 33-page booklet that describes ways to help manage the more common side effects of interferon treatment
- Side Effects Chart
A one-page printable sheet of tips for coping with common side effects of hepatitis C treatment.