Back to Hepatitis B
Christine M. Kukka
HBV Project Manager
Almost everyone who uses conventional or pegylated interferon to boost their immune system and/or antiviral medications such as lamivudine (Epivir-HBV), adefovir (Hepsera), or entecavir (Baraclude) to stop the hepatitis B virus (HBV) from replicating notices some side-effects.
Often, these side effects may be hard to distinguish from the fatigue, abdominal discomfort and other symptoms people with hepatitis B may experience.
When people take only an antiviral medication, some report an immediate improvement in their well-being and more energy as the volume of HBV replicating in their livers declines.
Others may experience no side effects at all. Side effects from lamivudine can also include stomachaches, diarrhea, headache, fatigue and chills. Side effects from adefovir include general weakness, headache, abdominal pain, nausea, flatulence, diarrhea and dyspepsia. Side effects from entecavir include headache, abdominal pain, diarrhea, fatigue, and dizziness.
Interferon, however, can present challenging side effects. In many children and some adults, the side effects are minimal, but some people experience intense fatigue and moderate to severe depression. Fortunately, there are steps you can take to manage side-effects.
It is highly recommended that you develop a good support system before starting treatment. On-line or local support groups, family, and friends can help get you or your child through the most difficult times during therapy. You should also contact your medical provider if moderate or severe symptoms occur. There are effective anti-depressant medications available as well.
General Tips for Interferon:
• If at all possible, take a week or two off work and decrease your personal responsibilities as much as possible when you begin interferon treatment. If a child or teen requires treatment, try to start interferon injections during the summer or over school vacation.
• Take medication before bedtime; this allows you to sleep through the worst of the side-effects because the majority occur within 4 to 6 hours after injection.
• If a child requires interferon injections, designate a “shot” room, such as a guest room, where the child does not regularly play, eat or sleep. Have the swab and syringe ready and perform the injection as quickly as possible to cut down on pre-shot anxiety.
• Drink plenty of fluids (without caffeine or alcohol) to relieve side-effects. It’s important to drink water or clear fruit juices (apple, cranberry, or grape) right before and right after self-injection.
• Some people take an over-the-counter pain reliever one hour before their injection to lessen side-effects. Others may find that taking a pain reliever 2 to 3 hours after the injection works better to relieve pain. Caution: Alcohol and acetaminophen, such as Tylenol (acetaminophen is an ingredient found in many over-the-counter cold preparations) taken together can cause fulminant hepatitis, and may lead to liver failure.
• Headaches can often be relieved by rest, massage, or application of heat to the back of the neck.
• Fever can sometimes be reduced by sponging with lukewarm water (do not use hot or cold water).
• Interferon can induce dry mouth, which can result in tooth decay and gum disease. Regular dental check-ups and good oral hygiene are extremely important.
Flu-like symptoms
• Use pain relievers as recommended by a physician; drink plenty of clear fluids each day; self-inject at bedtime to sleep through the symptoms.
Skin irritation
• If it occurs at injection site, rotate injection site and use local topical creams.
• Keep hands moisturized and use small bandages if nail cuticles become raw or bleed. Some children, who experience anxiety on interferon, may pick at their cuticles.
Fatigue
• Rest as much as possible.
• Get regular, moderate exercise.
• Change work or school schedule, if possible.
Irritability, depression anxiety
• Anxiety and depression can occur in those taking interferon. Get help from support groups, family, and friends if you notice excessive sleeping, anxiety or depression in yourself or other family members who are receiving therapy. Try relaxation techniques. Anxiety may be treated with medications recommended by a doctor; depression may be treated with antidepressants (allow enough time to become effective); consider professional help if symptoms become severe.
Loss of appetite
• Eat small meals regularly, even if you have little or no appetite; treat foods as medicine (they are necessary for good health); drink clear juices in addition to water; brush teeth often to help eliminate any metallic taste in your mouth.
Weight loss
• Choose foods that are high in calories and protein; drink clear juices in addition to water for extra calories; try products designed to promote weight gain, such as nutritional supplements, canned formulas, instant breakfast powders, high-calorie puddings, etc.; add ingredients to increase nutritional value. For example:
• Add powdered milk to regular milk, milkshakes, casseroles, soups, eggs, mashed potatoes, hot cereal, and puddings;
• Spread peanut butter on bread;
• Add cooked beans or hard-boiled eggs to soups, casseroles and pasta which already contain cheese or meat;
• Melt cheese on sandwiches, hamburgers, vegetables, rice or noodles.
Nausea/Vomiting
• Take over-the-counter medication for nausea as recommended by a doctor; avoid foods or odors that trigger nausea; avoid foods that are spicy, greasy, or deep-fried; eat small amounts of food every 2-3 hours; during periods of nausea, avoid citrus juices (orange, pineapple, and grapefruit) — instead, try clear juices, ginger ale, weak tea, or sports drinks; eat slowly and sip drinks slowly; eat foods at room temperature (neither very hot nor very cold); if morning nausea is a problem, eat some dry crackers when first awakening and get out of bed slowly.
Diarrhea
• Diarrhea is more common when taking high doses of interferon
• Ask your medical provider about dosage; try medications such as Immodium and bulking agents such Metamucil or psyllium bran.
Dry Mouth/Dental Care
• Visit your dentist before, during, and after treatment; drink plenty of water or clear fluids (avoid soda, coffee, tea); use artificial saliva; brush and floss your teeth, and rinse your mouth after every meal; use a soft toothbrush.
Rashes
• Moisturize daily with over the counter lotions; use oatmeal based lotions; over the counter hydrocortisone creams, oral antihistamines and other anti-itch medications. Avoid perfumed soaps or lotions; apply sunscreen when needed; consult with a dermatologist for more serious skin problems or rashes.
Insomnia
• Use relaxation techniques that include meditation, warm baths, visualization, and massage; develop consistent routines before going to bed; try over the counter medications such as Benadryl as recommended by a physician. Avoid exercise, vigorous activity, caffeinated drinks or medications that contain stimulants prior to bedtime; consult with a physician for prescription medication if insomnia persists for more than a few days.
The information in this fact sheet discusses a wide variety of side effects that some people may experience while on therapy. It is important to remember, though, that side effects vary considerably from person to person. Everyone experiences some side effects, but few experience severe or life-threatening side effects. While unpleasant, the majority of people can get through treatment if given proper care and support.
It is important to be proactive in dealing with the potential sides and to plan in advance for any potential problems that may come up during therapy or as a result of therapy. This can be accomplished by enlisting the help and support of family, friends, loved ones, employers and health care providers. Prepare others around you well in advance before starting therapy so you can be assured of their support and care. It is also a good idea to designate at least one person who can watch for anxiety and/or depression and who can contact family and/or medical professionals if the side effects become severe or life-threatening.
Getting through treatment is a process that may require you to draw on every reserve and resource available to you. It can be done, and it doesn’t have to be done alone.
Here are some on-line support groups for individuals and families touched by HBV.
Hepatitis B Information and Support List (HB-L)
www.hblist.org
This is the only adult support group for hepatitis B on the Internet. There are many adults and families who subscribe from all over the world. It is a well-supervised list with reliable information. All those affected by or concerned about hepatitis B are invited to participate.
HBV Adoption Support List http://health.groups.yahoo.com/group/
hbv-adoption/
Adoptive or biological parents of children living with hepatitis B are invited to participate. This is a restricted list to protect the privacy of parents and children, and requires pre-approval by the list owners to join.
PKIDs Email Support List
www.pkids.org
Adoptive and biological parents of children living with chronic hepatitis B or C, and HIV are invited to participate. This is an unsupervised list sponsored by the national non-profit organization PKIDs.
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