Lupus Center

  • Frequently Asked Questions

    The Lupus Center at Cincinnati Children's Hospital Medical Center provides answers to frequently asked questions about lupus.

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    + How did I get lupus?

    The cause of lupus remains unknown. Who gets lupus and why are two of the major questions researchers are trying to answer. Understanding what causes lupus could lead to better treatments, prevention or cure.

    + Can you "catch" lupus from another person?

    No, lupus is not contagious. You cannot "catch" it from another person. Lupus is also not a form of AIDS.

    + Will I get sick more often and will the symptoms get worse?

    Not necessarily. The symptoms of lupus change over time, sometimes getting worse, but at other times getting better.

    At times, symptoms may disappear entirely. When that happens, the disease is in remission. Even if the disease is in remission or not causing problems, people with lupus should keep their scheduled appointments with their doctors.

    The reappearance or sudden worsening of symptoms is known as a flare. It is possible to have a flare and not know it.

    Different symptoms may continue to appear years after lupus is diagnosed. New health concerns can be addressed at regular health checkups. Regular physical exams and lab work allow your medical team to note any changes and identify and treat flares early.

    + Will lupus just go away?

    No. Lupus is a chronic or long-lasting disease of the immune system and there is currently no cure for lupus. There are effective treatments that can reduce symptoms and prevent complications, allowing people with lupus to live active lives. There is also ongoing research aimed at finding a cure.

    One form of lupus, drug-induced lupus, usually disappears over time if the drug causing or inducing the lupus is stopped. It is not always possible to stop, since the drug inducing the lupus may be needed to control irregular heart rhythms or high blood pressure or other health concerns.

    + Why do I feel so tired and what can I do about it?

    Feeling very tired is a common complaint among people with lupus. This feeling of extreme fatigue goes beyond what you normally think of as tired. You may not be able to do your usual activities, such as working or participating in sports.

    The exact cause of this feeling of fatigue is not known. In some people, it may be related to another chronic or long-lasting disorder known as fibromyalgia. People with fibromyalgia often experience fatigue, muscle pain and multiple tender points on their body.

    Dealing with Fatigue
    These steps can help you manage your energy wisely and deal with fatigue.

    • Get enough sleep. You may need more than 8 hours.
    • Pay attention to your body. Slow down or stop before you get too tired.
    • Learn to pace yourself. Spread out your work or activity throughout the day and include time for rest periods. Set priorities for spending time and energy.
    • Don't try to finish a large project all at once. Divide it up into manageable pieces.
    • Make a plan every week of what you need and want to do. This plan can help you keep a good balance between rest and activity.
    • Review that plan every day and decide if you are able to carry out the entire plan for the day. If not, shift some activities around.
    • Follow an exercise plan that is suitable for you. Talk to the physical therapist and occupational therapist on the Lupus Center health care team about what exercises you can do to keep fit.
    • Don't blame yourself for feeling so tired. It is a symptom of the disease.
    • Talk to the Lupus Center health care team about how to manage your fatigue. Let team members know what seems to work for you and what doesn't.

    + What can I do when lupus makes me feel forgetful or upset?

    Feeling upset or forgetful can be symptoms of lupus. One out of five lupus patients experiences symptoms such as headaches, dizziness, memory problems or changes in behavior. These symptoms can result from changes in the brain or other parts of the central nervous system. These symptoms remain a subject of research.

    Feeling upset or stressed out is a possible trigger for flares. Feeling frustrated, angry, or alone can come from not being able to control lupus or the changes to your body. This added stress can make the symptoms worse.

    Dealing with a disease like lupus can be stressful, sometimes making you feel sad and other times angry. If you do feel sad and depressed, medications and counseling can help. Talk to a member of the Lupus Center health care team, who may refer you a psychologist.

    Dealing with Stress
    Here are some approaches that might help you cope with stress.

    • Stay involved in social activities.
    • Practice relaxation methods such as meditation and yoga.
    • Develop and maintain a good support system, which may include family, friends, members of the Lupus Center health care team and support groups. These groups can help you realize you are not alone in having to cope with lupus. They can provide emotional help and boost self-esteem and morale. Also, group members can learn from each other on how to handle stress.
    • Consider joining other types of groups -- such as school, church, or community groups -- which will keep you involved with other people and projects.
    • Exercise as your body permits and as your doctor recommends. Check with the Lupus Center health care team before starting an exercise program. 
    • Learn more about lupus. People who are well-informed and stay actively involved in their own care report less pain and more self-confidence.

    + Are there foods I need to avoid?

    There are no specific foods that everyone diagnosed with lupus needs to avoid. People who are taking corticosteroids to treat lupus may have an increased appetite and want to limit high calorie foods that may cause weight gain. Corticosteroids can also cause fluid retention so people using these medications may want to limit salty foods that can increase thirst. Choosing healthier foods lower in sodium is also helpful.

    Tips for Reducing Sodium Content

    • Don't automatically reach for the salt shaker. Instead of salt, use herbs and spices in both cooking and at the table.
    • When eating out, ask for foods to be prepared without salt and ask for sauces on the side. Also, limit the use of condiments, such as salad dressings, ketchup, tartar sauce, barbecue sauce and mustard. These condiments pack a lot of sodium in a small serving.
    • Limit the use of canned, processed or frozen foods, or choose low sodium versions of these foods. 
    • Read food labels and choose foods low in sodium.

    Understanding Food Labels

    Sodium free
    Only a very small amount of sodium per serving

    Very low sodium
    35 mg or less sodium per serving

    Low sodium
    140 mg or less sodium per serving

    Reduced sodium
    The level of sodium in the food has been reduced by 25%

    Light or Lite sodium
    The level of sodium in the food has been reduced by at least 50%

    Simple rule to remember: If salt is listed as one of the first five ingredients, the food is probably too high in sodium.

    + Do I have to follow a special diet?

    Proper nutrition is an important part of your treatment. While you may not need to avoid any food entirely, some foods are wiser choices than others.

    Recommended Food Choices for a Healthy Diet

    Choose more often

    Choose less often

    Dairy Products

    Mozzarella cheeseAmerican cheese
    Low-fat/skim milkWhole milk
    Low/non-fat yogurtIce cream
    Low/non-fat frozen yogurt
    Low-sodium/low-fat cheese

    Meat, Poultry, Fish

    Lean beefSausage
    TurkeyPepperoni
    Chicken breastSalami
    Deli meats
    Hot Dogs
    Baked / broiled / grilled meatsBreaded / fried meats
    Broiled fishFried fish, fish sticks

    Vegetables

    Fresh or frozen vegetablesCanned vegetables
    Low-salt V8 / tomato juiceRegular V8 / tomato juice
    Sauerkraut
    Dill pickles
    Olives

    Fruits

    Fresh fruitFruit juices
    Canned fruit in natural juicesCanned fruit in syrup

    Starches / Cereals / Grains

    High-fiber / low-sugar cereals*Pancakes
    Waffles
    French toast
    Whole grain / low-sodium pretzelsSalted snacks
    Salt-free crackersSalted or buttered crackers
    Wheat / multi-grain crackers
    Angel food cakeCakes
    Rice cakesDonuts
    Pastries
    Biscuits

    Miscellaneous

    Garlic or onion powderSalt or "light salt"
    Reduced salt soupRegular or canned soup
    Homemade soupBouillon
    Plain cheese pizzaPizza with pepperoni or sausage
    Low-salt canned foodsRegular canned foods
    Frozen dinners
    Seasoned saltMeat tenderizer
    Catsup
    Mustard
    Barbecue sauce
    Hot sauce
    Fast food dips

    *At least 3-5 grams of fiber per serving and less than 10 grams of sugar per serving.

    The Food Guide Pyramid is an excellent resource for balanced nutrition. Visit the  American Dietetic Association web site for detailed descriptions of serving sizes appropriate for your age.

    + If I am taking steroids, do I need to increase my intake of calcium?

    Steroids have negative effects on bone health. They decrease the body's ability to absorb calcium through the intestines and increase calcium loss through the kidney.

    Adequate calcium intake is important, especially during the adolescent years when peak bone mass is achieved. Follow a balanced diet with healthy food choices that meet calcium needs and limit salty foods that are high in sodium. 

    Calcium Needed to Meet Your Recommended Daily Allowance (RDA)

    Age

    RDA for calcium

    1 to 3 years 500 mg per day
    4 to 8 years 800 mg per day
    9 to 18 years1,300 mg per day
    19 to 50 years1,000 mg per day

    Although these are the national daily recommended allowances, your doctor may recommend higher calcium intake. You may also be advised to take supplements that contain both calcium and vitamin D, which help your body use calcium properly.

    Dairy products are excellent choices for calcium because they are fortified with vitamin D. Drink three to four glasses of low-fat milk daily when taking steroids and include other high calcium sources, such as yogurt, cheese, pudding, cottage cheese or fortified juices and beverages.

    + Am I allowed to drink alcohol?

    Most people with lupus who are old enough to drink alcohol can do so in moderation. Be aware, however, that alcohol can change the way the body uses or metabolizes certain medications, rushing them into the bloodstream. This can intensify both the good and not-so-good effects of medications. Alcohol can also interfere with good nutrition, causing the body to burn up some nutrients too quickly.

    Nonsteroidal anti-inflammatory drugs (NSAIDs) can cause stomach and intestinal upset and irritation, and alcohol can make it worse. Avoid drinking alcohol while taking NSAIDs. Women who are pregnant should not drink alcohol.

    + Am I allowed to exercise?

    Yes, in most cases people with lupus should exercise. You may need to modify exercise activities due to painful joints, fatigue or other lupus symptoms.

    There are many benefits to a daily exercise program. The Lupus Center physical therapist or occupational therapist can assess your current condition and design an exercise program tailor made for you. It is important for you to share your personal physical goals with the therapists and the physicians so the Lupus Center team can work with you to help you meet your goals. Learn about the types of exercise you can do and tips on exercising effectively and sensibly.

    + Can I use a tanning bed?

    You really shouldn't. Tanning booths or tanning beds expose you to ultraviolet light (UV). Most people with lupus are very sensitive to ultraviolet light.

    Getting too much UV can make lupus skin rashes worse or cause new ones to appear. UV can also make other lupus symptoms worse. UV, whether from a tanning bed or from the sun, can also cause skin cancer.

    + Can women with lupus get pregnant and deliver a healthy child?

    Yes. Ideally, a woman should have no signs or symptoms of lupus and be taking no medications for at least six months before becoming pregnant. Use of some lupus medications may harm the developing baby.

    Two drugs used to treat lupus as well as cancer --cyclophosphamide (Cytoxan") and methotrexate -- should not be taken by women who are pregnant, think they might be pregnant or are planning to become pregnant.

    Pregnancy in a woman with lupus is considered high risk, but most women with lupus carry their babies safely until the end of pregnancy. Women with lupus do have higher rates of miscarriages and premature births compared to women in general.

    Women with lupus, especially those being treated with corticosteroids, also are more likely to develop high blood pressure, diabetes, hyperglycemia, and kidney complications. Women who have lupus and a history of kidney disease have a higher risk of preeclampsia (high blood pressure combined with a buildup of excess watery fluid in the body). Lupus flares can occur during pregnancy and require prompt treatment.

    Possible complications mean that regular medical care and good nutrition are essential during pregnancy for women with lupus. Do not smoke and do not drink alcohol.

    Women who have lupus and those who have the autoantibodies anti-Ro/SSA or anti-La/SSB should be aware that autoantibodies in their blood can pass to the fetus and cause neonatal lupus.

    After delivery, the baby may develop a rash and heart, blood and liver problems. These symptoms usually go away over the next several months.

    Occasionally, neonatal lupus can cause a serious heart problem that slows down the natural rhythm of the heart. This condition is almost always permanent and most children who develop it will need pacemakers for life.

    Women with lupus who are pregnant should make sure they have access to a neonatal intensive care unit at the time of delivery in case the baby needs special medical attention.

    + Does lupus affect sexual activity and fertility in men?

    Sexual activity, potency and fertility do not differ among men with lupus and those who do not have lupus. Young men with lupus have normal sexual and reproductive abilities. As men age, they normally experience a drop in their levels of androgens, a hormone that is usually present in high levels in males and lower levels in females. This drop in androgen levels occurs in men who have lupus and those who do not have lupus and can cause reduced sex drive and sexual activity.

    + What forms of contraception are safe to use for a person with lupus?

    Barrier methods of contraception, such as a diaphragm or a condom with spermicidal foam, are considered the safest contraceptive options for people with lupus. Intrauterine devices (IUDs) may increase the risk of infection for women taking immunosuppressive drugs, and the risk of bleeding for women with thrombocytopenia, an abnormally low level of platelets in the blood. 

    Women may use oral contraceptives (birth control pills) containing estrogen as long as their blood is not overly likely to coagulate or thicken into a mass. Other options include birth control pills that contain only the hormone progesterone or injectable progesterone; for  example, medroxyprogesterone acetate (Depo-Provera") given for up to three months at a time.

    + What is a kidney biopsy?

    A small sample of tissue is removed from the kidney and examined under a microscope. This procedure is known as a biopsy and can show if there are immune complexes and inflammation in the kidney. This information can be used to develop a treatment program for lupus.

    + Why do I have to worry about heart disease?

    In some people, lupus can cause inflammation of the heart muscle or of the membrane that surrounds the heart. This can cause chest pains or other symptoms of heart disease. In addition, the two most common drugs associated with drug-induced lupus are procainamide (Procan" Pronestyl"), used to treat irregular heart rhythms, and hydralazine (Apresoline" or Apresazide"), used to treat high blood pressure. While symptoms of drug-induced lupus generally go away once the drug is stopped, stopping these drugs would increase the risk of heart disease.

    Long-term side effects of corticosteroids used to treat lupus can include high blood pressure and damage to the arteries. Generally, the higher the dose and the longer corticosteroids are taken, the greater the risk of side effects and the more severe the side effects will be for patients. 

    Immunosuppressives may be used to reduce or sometimes eliminate the need for taking corticosteroids. This spares patients from the side effects of corticosteroids and is known as steroid-sparing. Researchers are also working on new ways to limit or offset the use of corticosteroids.

    + Do I have to take medications every day?

    Most but not all lupus medications need to be taken every day, at least while the disease is active. Check with your doctor about when and how often your medications should be taken and then take them exactly as instructed.

    + Why is it necessary to take prednisone at the same time every day?

    Corticosteroids, including prednisone (Deltasone", Orasone") are related to the natural anti-inflammatory hormone cortisol and work by rapidly suppressing inflammation. Prednisone pills should be taken at the same time each morning because natural cortisol levels peak in the morning.

    + I have been told that I cannot just stop taking prednisone, but have to taper off the drug. Why is that so and what does it mean to taper off?

    Corticosteroids such as prednisone are powerful drugs with many possible side effects. Therefore it is important that you take these drugs exactly as prescribed. Never miss a dose and never stop the medication suddenly.

    In general, once your lupus symptoms have responded to treatment, you will gradually need less and less prednisone until you can stop completely. This is called tapering.

    Always follow the doctor's directions on how to taper off corticosteroids. The adrenal glands, small glands that sit on top of the kidneys, normally make small amounts of the natural anti-inflammatory glucocorticoid, called cortisol. Taking corticosteroid medication can cause the body to slow down or stop production of natural cortisol made in the body.

    Suddenly stopping corticosteroids can leave you without either the natural or the drug form of corticosteroids. This condition is known as adrenal insufficiency and can cause weakness, fatigue, fever, weight loss, vomiting and diarrhea. 

    If it is not possible to stop prednisone completely, your doctor will prescribe the smallest dose possible to keep symptoms under control.

    + Can I take alternative medications or dietary supplements?

    Some alternative medications and herbal and vitamin supplements may not mix well with medications being used to treat lupus. Always check with your doctor before taking any other medications or supplements.

    No research studies to date have shown that these alternative medications and dietary supplements have an effect on the disease process or prevent organ damage. Some alternative approaches may help with stress and coping with a chronic disease.

    Such approaches may become part of the treatment plan, as long as they do not have other effects that might be considered harmful and you understand that these approaches are to be used with, not instead of, medical treatment. Work together with the Lupus Center health care team to find the best way to treat your lupus symptoms and maintain the best possible overall health.

    + How do I tell my friends and family about lupus?

    Dealing with a life-long illness such as lupus can be hard. Your friends, family, classmates, teachers, bosses or coworkers may not understand how lupus affects you and what you can do. Members of the Lupus Center health care team can help you understand the disease and explain it to your family and friends.

    You can tell them lupus is a chronic disease that changes over time, but it is not contagious. Let them know that lupus and the medications used to treat it can sometimes change your physical appearance, your energy levels, your ability to do certain tasks and your mood.

    Talking openly and honestly can help your friends and family understand these changes when they occur. Tell them as much as you think they need to know, when they need to know it. If they want more information, you can refer them to the Lupus Center and other resources we provide.

    Remember, it is possible to have lupus and have an active, rewarding life. It is important you take control of your illness and not allow it to take control of you. Having a positive attitude will make it easier for your family and friends to relate to you as they did before you were diagnosed with lupus.

    + Is financial assistance available to patients at the Lupus Center?

    The financial service representative and the social worker on the Lupus Center health care team can help with financial concerns that may occur with lupus.

    The social worker can assist in applying for Medicaid and dealing with other insurance issues and is also an excellent person to help identify resources within the hospital and local community that might provide financial assistance.

    Cincinnati Children's Hospital Medical Center also has financial counselors. Along with the Lupus Center financial service representative and social worker, these financial counselors are prepared to help interpret medical bills and to help families apply for financial assistance to help pay for medical services.

    There are different financial assistance programs available to help with the cost of medical care. The financial counselors are available daily at Cincinnati Children's Main Campus.

    + How can I get help paying for medications?

    Financial assistance for prescription medications is available in many forms, including copayment coupons, discounts and free medications for those who qualify financially. The Lupus Center may be able to provide samples of certain medications.

    Medicaid and the Bureau for Children with Medical Handicaps (BCMH) may also provide a prescription benefit. Additional assistance may be available through a Medicare prescription plan.

    + I have a question that is not included on this list. How can I get my question answered?

    If you have a question, or would like more information, please call the Lupus Center at 513-636-5203 or email us at lupusteam@cchmc.org.