Aspirin and Other Anti-Inflammatory Drugs

Aspirin may be the only medication your doctor will prescribe. Aspirin is an anti-inflammatory drug, which makes it helpful in treating the symptoms of lupus, some of which are caused by inflammation. It may be necessary to take large doses of aspirin as directed at regular intervals for it to be effective.

However, some people are bothered by stomach problems when taking large doses of aspirin. One way to lessen this problem is to take the tablets with a meal and with plenty of liquids. you might try using enteric- (en-TER-ik) coated aspirin tablet. These do not dissolve until they have passed through the stomach. Another hints is to take antacids about one-half hour after meals and at bedtime to help protect the lining of your stomach.

There are several types of non-steroidal anti-inflammatory drugs, or NSAIDs (EN-seds). NSAIDs are similar to aspirin. Examples include diclofenac, etodolac, flurbiprofen, ibuprofen, indomethacin, nabumetone and naproxen.

For some people, NSAIDs may be more effective or better tolerated than aspirin. They all have the potential for causing stomach irritation, bleeding from the stomach or intestines, ulcers or diarrhea. Your doctor may prescribe anti-ulcer medications to help you tolerate aspirin or other NSAIDs

There are other problems associated with NSAIDs. They can thin the blood and extend bleeding time. If you are scheduled for surgery, you may need to temporarily stop taking NSAIDs. In addition, aspirin and most NSAIDs can damage the liver and/or decrease kidney function. However, the damage usually can be reversed when the medication is stopped or given in smaller doses.

Antimalarial Drugs

Some doctors prescribe drugs commonly used to treat malaria. The most commonly used antimalarial drug for lupus is hydroxychloroquine.

There is no known relationship between lupus and malaria, but antimalarial drugs can interfere with the formation of antigens which, in turn, cause the body to form antibodies. This can reduce inflammation and the need to take inflammation-reducing corticosteroid drugs.

Antimalarial drugs are helpful in treating discoid lupus and some of the manifestations of systemic lupus, especially fever, joint pain and pleuritis (inflammation of the lining of the lungs, also known as pleurisy). These drugs can help prevent lupus rashes and systemic problems that can occur if you are sensitive to ultraviolet light. They also can help decrease fatigue.

The most common side effects from antimalarials are mild nausea, vomiting and diarrhea. On rare occasion, deposits from hydroxychloroquine may form in the transparent outer covering of the eye (cornea). You won’t be able to tell the deposits are there, but you may notice a blurry ring around lights. If this happens, be sure to tell your doctor. The deposits won’t harm your eye. They usually go away six to eight weeks after you stop taking the medicine.

In rare cases that usually follow prolonged or excessive use, hydroxychloroquine may injure the retina, nerves from the back of the eye that enable you to see. Early detection of this unusual occurrence can minimize its damage. Regular visits to an ophthalmic specialist who is familiar with this toxicity help to reduce the slight risk from this medication. patients who experience visual change while taking hydroxychloroquine should discontinue this medication until the cause of the change can be determined.

Corticosteroids

Corticosteroids (CORE-tih-ko-STER-oydz) are widely used to treat lupus because of their overall effectiveness in reducing inflammation. They are related to cortisol, a hormone that occurs naturally in the body and controls many important body functions. You could not live without cortisol.

Doctors sometimes refer to corticosteroids as steroids. However, corticosteroids are not the same and anabolic steroid drugs that some athletes abuse.

It is common for doctors to prescribe large doses of corticosteroids when lupus is very active, especially if it affects the kidneys or nervous system. As symptoms and abnormal laboratory test improve, the steroid dose usually is slowly tapered down over a period of time.

For some people, and alternate, or every-other-day, dose of steroids may be prescribed. This method of taking steroids may help to decrease some of the side effects of the drug. Similarly, if you have skin rashes, you may be given creams or ointments containing corticosteroids.

Sometimes pulse steroids may be prescribed if a person is very sick. This means that a very large dose of corticosteroid is given directly into the veins, usually every day for a three-day period.

Common side effects of the cortisol-like drugs include weight gain, rounding of face, easy bruising and slow healing. Large doses of corticosteroids may cause mood swings, from extreme nervousness and insomnia to depression.

Other serious side effects include the development of fluid retention with swelling of the legs and high blood pressure, the triggering or worsening of diabetes, an increase in the risk or infection and, rarely, bleeding from the stomach. Use of corticosteroids over a long period of time may lead to cataracts; glaucoma; the death of bony tissue, called osteoneocrosis (OS-te-o-ne-KRO-sis); and/or thinning of the bones called osteoporosis (OS-tee-o-por-O-sis). If you are taking corticosteroids, our doctor may recommend that you take calcium and vitamin D supplements to help prevent osteoporosis.

If you are taking these powerful drugs, be sure to inform and doctor or dentist before you have surgery or undergo any other type of stressful procedure. Your body may need more steroids at such times. It’s also recommended that you wear special medical identification. This will alert others that you are taking corticosteroids in case you are unable to tell them.

Caution! Never change you dose of corticosteroids without first discussing it with your doctor, since stopping or changing the dose quickly can make you very ill.

Immunosuppressive Drugs

Immunosuppressive (im-you-no-su-PRESS-iv) drugs are used to treat autoimmune diseases and reduce the activity of the immune system. they often are prescribed along with corticosteroids to treat people who have not responded to other types of drug therapy. They also may be used to help cut down the dose of corticosteroids or to prevent new flares of lupus activity.

The most commonly used immunosuppressive drugs are azathioprine and cyclophosphamide. Chlorambucil, methotrexate, nitrogen mustard and cyclosporine, which also is given to people with kidney transplants, occasionally may be prescribed.

These drugs can have serious side effects. If you are taking an immunosuppressive drugs, regular blood tests must be performed because the drug can interfere with the proper formation of blood cells. The development of an infection also is more likely when you are taking an immunosuppressive drug because it reduces the activity of the immune system. Therefore, it is important to notify your doctor if you develop a fever or any other new symptoms while taking immunosuppressive drugs.

Exercise

It is important to do proper exercises on a daily basis. This may be easier to do when lupus is not in an active stage and you are feeling better. However, even during a flare, doing gentle range-of-motion exercises is important to keep you from becoming stiff. Exercise also can help you avoid muscle weakness. A physical therapist can work with your doctor to set you an exercise program that fits your schedule and physical condition. You can work together with your health professionals by designing a simple walking program for yourself. Even walking a few blocks helps. You can gradually increase the distance as you get stronger.

Dealing with Fatigue

We all need to balance rest and activity. This balance is especially important for people with lupus. Part of this balancing act includes pacing yourself during the day, as well as from day to day. Allow plenty of time to finish the things you start so you won’t feel rushed. Don’t try to do too much at one time. Be realistic. Planning ahead and pacing yourself also include doing the most difficult things when you-re feeling your best.

For more information about dealing with fatigue, contact you local Arthritis Foundation chapter and request a free copy of their brochure, Managing Your Fatigue.

Diet

Eating a balanced diet is an important part of your treatment plan. At times when your lupus is active and your appetite is poor, it may be helpful to take and multivitamin. It is important to remember, however, that excessive doses of vitamins can have serious side effects. You should be sure that you doctor is aware of any vitamin preparations you take.

At times you may be placed on a special diet because of problems caused by features of your lupus, such as kidney disease. A low-salt diet will help prevent the accumulation of edema fluid. You also may need to limit the amount of protein in your diet.

When it comes to alcohol consumption, moderation is advised. Alcohol can have a potentially harmful effect on the liver. If you decide to have an occasional drink, make sure you also eat something. In some instances, alcohol may be prohibited if you are taking certain drugs for your lupus, such as methotrexate.

Special Concerns

Sun and Artificial Light Exposure

Exposure to the sun and certain fluorescent lighting is known to make the skin rashes and/or other systemic problems associated with lupus worse in 40 to 60 percent of people with this disease. Approximately one-third of people with lupus are sun-sensitive (photosensitive). Sun exposure may cause generalized flares of lupus, resulting in fever, joint pain or even inflammation involving the heart, lungs, kidneys or nervous system. Of course, what is too much sun for one person may be fine for someone else. The degree of photosensitivity varies with disease activity.

It’s best to take simple precautions. One precaution is to avoid outdoor activities during peak sunlight hours (usually 10a.m.- 4p.m.). Another precaution is to regularly use a sunscreen lotion or sunblock on your skin. Sunscreens can be bought without prescription and are available in many forms, some of which also include skin lubricants. Those with a sun protection factor of 15 or more are the best. Because some chemicals in sunscreens may cause skin irritation or rashes, it may be necessary to try a different brand. Checking the ingredients on sunscreen labels can help avoid problems. Oxybenzone blocks violet A (UVA) light, and chemical-free formulas block UVA light, UVB light and infrared rays (IR).

During unavoidable times of sun exposure, it is important to wear a hat to shade you from direct sun and clothing to cover your arms, legs and chest.

Because of possible problems from sun exposure, you may wonder if it is safe to move to a warmer climate. As long as you protect yourself when you are out in the sun, where you live should not affect your illness.

The sun is not the only light source that can cause problems. Sometimes artificial sources of ultraviolet light, such as photocopying machines, slide projector lights, halogen lamps or TV studio lights, can aggravate lupus. It’s a good idea to avoid these sources as much as possible. White fluorescent light can, on rare occasions, cause problems. Installing plastic shields over fluorescent lights can help block ultraviolet leakage. Using a sunscreen and wearing protective clothing is suggested. Women may find that wearing opaque makeup is helpful.

Pregnancy and Contraception

Pregnancy may present special problems for women with lupus. During pregnancy or several weeks to months after delivery, women may experience lupus symptoms for the first time, or the symptoms they already have can worsen.

Fertility, or the ability to conceive, may be decreased during periods of disease flares. This may be the result of hormonal changes caused by lupus or from the side effects of medications used to treat lupus.

Women with lupus also have an increased chance of having a miscarriage either early or late in their pregnancy. Certain abnormal antibodies present in the blood of some women with lupus (anti-phospholipid or anti-cardiolipin antibodies) may increase the chance of having a miscarriage. Therefore it is important that you discuss any plans to become pregnant with your doctor and that you visit your doctor regularly during your pregnancy. Blood tests should be done to detect the presence of the abnormal antibodies and to measure other signs of lupus activity. With these precautions, many women with lupus can have normal pregnancies.

Occasionally, newborn babies of mothers with lupus have a mild illness caused by transfer of the mother’s autoantibodies through the placenta to the baby. This illness may include a rash, anemia, low platelet or low white blood cell counts or an enlarged liver. These features go away, generally by six months after birth. On very rare occasions, babies may have a permanent problem called congenital heart block, which causes a slow heartbeat. This may require treatment with a pacemaker.

If, on the other hand, your doctor advises against pregnancy, or if you do not wish to have children, it’s important to continue practicing birth control measures. Even though fertility may be decreased during periods of disease flares, it’s still possible to become pregnant. An unplanned pregnancy during a period of active disease could negatively affect your health and/or expose the growing fetus to medications you have taken to treat your lupus. Thee safest method of contraception for women with lupus is the diaphragm used with contraceptive jelly. However, some women with lupus are able to use birth control pills safely. Special care is advised regarding the use of intrauterine devices (IDUs) because of the risk of infection.

Kidney Dialysis and Transplantation

Sometimes, even with the use of corticosteroids and immunosuppressive drugs, kidney failure occurs. Fortunately, dialysis (die-AL-ah-sis) is available to cleanse waste products from the blood. One form of dialysis is hemodialysis (HE-mo-die-AL-ah-sis), in which catheters are placed in an artery and vein and the blood is run through a cleansing machine.

Another form of dialysis is continuous ambulatory peritoneal dialysis (CAPD), a cleansing procedure in which fluid is instilled into and drained out of the abdominal cavity. A person can perform this procedure at home.

When kidney failure is permanent, a kidney transplant may be performed. This procedure often can allow a person with lupus to return to a normal lifestyle, even though medication generally is required to prevent rejection of the new kidney.

Infections

People with lupus are more likely to develop infections. This is true because the immune system may not be working properly or because of he side effects of medications, especially corticosteroids and immunosuppressive drugs. In some people with lupus, infections can trigger disease flares. If you have a fever, which is a sign of possible infection, consult your doctor.

Dryness

Women with lupus who have gone through menopause or who also have Sjogren’s syndrome may experience vaginal dryness. Estrogen creams can help restore moisture. If you have lupus and experience this dryness, be sure to consult your rheumatologist before using and lubricating products.

Coping Tips

There’s no question that there are social and emotional problems that come with having a chronic disease. Talking about your fears, anger and depression usually helps. At times it may be hard to confide in your family, friends or doctor. Joining a support group and talking about problems and frustrations with others who have lupus may be just what you need to improve your spirits, and it can help you find solutions to your problems, too. It is important to remember, though, that you may never experience some of the problems that others with lupus have had.

Reading about lupus is another way to learn about how it affects your body and how other people have dealt with it.

There may be times, though, when attending support groups or reading about lupus may not be enough to overcome a sense of being overwhelmed. At such times counseling from a person trained in helping people with chronic disease such as lupus may be helpful. Your doctor or local chapter of the Arthritis Foundation can give you suggestions about agencies and mental health professionals such as social workers and psychologists who may be able to offer their support. Patient education programs such as the SLE Self-Help Course may be offered by local chapters of the Arthritis Foundation.

For More Information

Contact you local Arthritis Foundation chapter for a complete list of brochures about arthritis. Most chapters will send you a single brochure free of charge. Their services also may help you.

Brochures

Arthritis and Employment: You Can Get the Job You Want - A discussion or the various stages of a job search; an explanation of how to make disability laws work for you; and suggestions for discussing arthritis with employers.

Arthritis Answers - An overview of the more common types of arthritis, including treatments.

Arthritis on the Job: You Can Work with It - A guide to your legal rights in the work-place; suggestions for gaining support from your employer and co-workers; and tips on how to make your work easier.

Aspirin and Other NSAIDs - An overview of this specific group of medications used to decrease inflammation and suppress the activity of the immune system.

Exercise and Your Arthritis - Information on how exercise can benefit people with arthritis.

The Family - Effects of arthritis on family life and ways to cope.

Hydroxychloroquine - An overview of when hydroxychloroquine may be used, how it works and possible side effects.

Living and Loving - Tips for solving problems when arthritis interferes with sexuality.

Managing Your Fatigue - Basic information about arthritis-related fatigue and tips on how to manage it.

Managing Your Health Care - Tips on how to establish and strengthen communication with your doctor.

Managing Your Pain - A discussion of how arthritis causes pain, how you react to pain and how you can help manage your pain.

Managing Your Stress - Tips for reducing the stress associated with arthritis.

Methotrexate - An overview of when methotrexate may be used, possible side effects and tips for taking it.

Surgery - A description of the different types of joint surgery, plus questions to ask your doctor prior to surgery.

Travel Tips - Tips for easier land, sea and air travel.

Unproven Remedies - Tips on how to identify unproven remedies plus information on safe and effective ways to control the pain and loss of motion associated with arthritis.

Services

Systemic Lupus Erythematosus Self-Help Course - Learn how to take a more active role in your health care in this seven-week course designed specifically for people with lupus.

Arthritis Self-Help Course - Learn how to take control of your own care in this six-week (15 hour) class for people with arthritis.

Warm-water exercise program - Join in the fun of a six-to-10 week exercise program in a heated pool.

Land-exercise programs - Move easier in several levels of exercise classes, or exercise at home by purchasing a Arthritis Foundation exercise videotape.

Support groups and clubs - Share your successes and problems with others, and get tips on how to overcome problems caused by arthritis.

The Arthritis Foundation

The Arthritis Foundation is the source of help and hope for nearly 40 million Americans who have arthritis. The Foundation supports research to cure and prevent arthritis and seeks to improve the quality of life for those affected by arthritis.

Formed in 1948, the Arthritis Foundation is the only national, voluntary health organization that works for all people affected by any of the more than 100 forms of arthritis or related diseases. Volunteers in chapters nationwide help to support research , professional and community education programs, services for people with arthritis, government advocacy and fund-raising activities.

The American Juvenile Arthritis Organization (AJAO) is composed of children, parents, teachers and others concerned specifically about juvenile arthritis.

As a not-for-profit organization, the Arthritis Foundation relies on public contributions to fund research and provide service programs. You can become a member of the Arthritis Foundation and help support research and the fight against arthritis. Please contact your local chapter. You will receive materials about the benefits of Arthritis Foundation membership, including the bimonthly magazine Arthritis Today.

The Arthritis Foundation acknowledges with appreciation the following people for their assistance in the preparation of this booklet: Ellen M. Ginzler, MD, SUNY Downstate Medical Center, Brooklyn, NY; Robert Lahita, MD, St. Lukes/Roosevelt Hospital, New York, NY; Kathleen Lewis, RN, MS, CMP, Decatur, GA; Carolyn McGrory, RN, MS, Thomas Jefferson University, Philadelphia, PA; Vibeke Strand, MD, Universtiy of California, San Francisco, CA; and Daniel Wallace, MD, Los Angeles, CA.