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Lupus : FAQ, Part 2
by Women's Health Information Center

(Page 2 of 2)

What are flares?

When symptoms appear, it's called a "flare." These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you've been out in the sun or after a hard day at work. Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare.

Take steps to prevent flares:

  • Learn to recognize that a flare is coming.
  • Try to set realistic goals and priorities.
  • Limit the time you spend in the sun.
  • Maintain a healthy diet.
  • Develop coping skills to help limit stress.
  • Get enough rest and quiet.
  • Exercise moderately when possible.
  • Develop a support system by surrounding yourself with people you trust and feel comfortable with like family and friends.

How is lupus treated?

There is no known cure for lupus, but there are effective treatments. Most of the symptoms of lupus are from inflammation (swelling), so treatment focuses on reducing the swelling.

Treatment may include taking these medicines:

Nonsteroidal anti-inflammatory drugs (NSAIDs). NSAIDs are often used to reduce joint and muscle pain and inflammation in people who have mild SLE (pain isn't bad or organs aren't affected). There are many different types of NSAIDs, both prescription drugs and over-the-counter drugs. They include aspirin, ibuprofen, naproxen, and other medicines. Common side effects of NSAIDs can include stomach upset, heartburn, drowsiness, headache, and fluid retention. If you have any side effects, talk to your HCP. NSAIDs can also cause problems in your blood, liver, and kidneys. Stay in touch with your HCP to ensure these problems aren't happening to you.

Antimalarial drugs. Medicines used to prevent or treat malaria are used to treat joint pain, skin rashes, and ulcers. Two common antimalarials are hydroxychloroquine (Plaquenil) and chloroquine (Aralen). Side effects of antimalarials can include stomach upset, nausea, vomiting, diarrhea, headache, dizziness, blurred vision, trouble sleeping, and itching.

Corticosteroid hormones. These are powerful drugs that reduce inflammation in various tissues of the body. They can be taken by mouth, in creams applied to the skin, or by injection. Prednisone is a corticosteroid that is often used to treat lupus. Corticosteriods can have various side effects, so HCPs try to use the lowest dose possible. Short-term side effects include swelling, increased appetite, weight gain, and emotional ups and downs. These side effects generally stop when the drug is stopped. Long-term side effects of corticosteroids can include stretch marks on the skin, excessive hair growth, weakened or damaged bones, high blood pressure, damage to the arteries, high blood sugar, infections, and cataracts. People with lupus who are using corticosteroids should talk to their HCPs about taking calcium supplements, vitamin D, or other drugs to reduce the risk of osteoporosis (weakened, fragile bones).

Immunosuppressive agents/chemotherapy. These agents are used in serious cases of lupus, when major organs are losing their ability to function. These drugs suppress the immune system to limit the damage to the organ. Examples are azathioprine (Imuran) and cyclophosphamide (Cytoxan). These drugs can cause serious side effects including nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection.

Work closely with your HCP to ensure that your treatment plan is as successful as possible. Because some treatments may cause harmful side effects, promptly report any new symptoms to your HCP. It is also important not to stop or change treatments without talking to your HCP first.

Is it safe for me to become pregnant?

Today, most women with lupus can safely become pregnant. With proper medical care, you can lower the risks of pregnancy and deliver a normal, healthy baby. However, you must carefully plan your pregnancy. Your disease should be under control or in remission for 12 months before you get pregnant. Find an obstetrician (OB) who is experienced in managing high-risk pregnancies and who can work closely with your primary HCP. Plan your delivery at a hospital that can manage high-risk patients and provide the specialized care you and your baby may need. Talk to your doctor about which medicines are safe to take while pregnant.

Women with lupus may face certain problems during the pregnancy. While flares are not caused by pregnancy, flares that do develop often occur during the first or second trimester or during the first few months following delivery. Most flares are mild and easily treated with small doses of corticosteroids. Another complication is pre-eclampsia. If you develop this serious condition, you will have a sudden increase in blood pressure, protein in the urine, or both. This is a serious condition that requires immediate treatment, and you might have to deliver your infant early.

Babies born to women with lupus have no greater chance of birth defects or mental retardation than do babies born to women without lupus. As your pregnancy progresses, your OB will regularly check the baby's heartbeat and growth with sonograms (an machine that creates pictures of your baby's organs). Although giving birth to your baby early (prematurity) presents a danger to the baby, most problems can be successfully treated in a hospital that specializes in caring for premature newborns. About 3% of babies born to mothers with lupus will have neonatal lupus.

Breastfeeding your baby is safe for mothers with lupus. If you are on medications and breastfeeding, talk with your provider about how the medicine might affect your baby.

How can I tell the difference between symptoms of lupus and symptoms of pregnancy?

It may be hard to tell the difference. You may have symptoms from being pregnant that you mistake for lupus symptoms. Here are just some problems that may cause confusion:

Skin. While pregnant, you may have red palms and a rash. Lupus can also cause a rash.

Joints. Lupus can cause arthritis, and pregnancy can cause aching in your joints.

Lungs. It may be hard for you to breathe if you have lupus. Pregnancy can also cause a shortness of breath and hyperventilation.

Talk to your health care provider about how to tell the difference between the physical changes you will have during your pregnancy and symptoms of lupus.

How can I cope with the stress of having lupus?

Staying healthy takes extra effort and care for women with lupus. Sometimes, women with lupus may feel tired, and you may need extra rest because of your treatments. If you feel tired, make a point to allow yourself extra time in your schedule for rest.

Some approaches that may help you to cope with lupus include:

  • exercising
  • relaxing using techniques like meditation
  • setting priorities for spending time and energy
  • educating yourself about the disease
  • having a good support system

A support system may include family, friends, HCPs, community organizations, and organized support groups. Participating in a support group can provide emotional help, boost self-esteem and morale, and help develop or improve coping skills. Also, talk to your family about how they can support your efforts to take care of yourself.

What research is being done on lupus?

There are many promising areas of research on lupus. Studies are looking at the safety of estrogen use (HT and birth control pills) by women with lupus; causes or risk factors for lupus (including behavior, genetics, environment, and culture); and lupus in minority women.

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