of Systemic Lupus Erythematosus
There is currently no cure for lupus but advances in medicines are improving treatment. The goal of treatment is to prevent flares, treat flares when they do occur, and reduce organ problems and other complications. Your doctors may prescribe medications to treat lupus directly as well as other conditions related to lupus; these include high cholesterol, high blood pressure, and infection.
Because lupus may affect different parts of your body in different ways, you may need to see several kinds of doctors. It is extremely important to have a singly physician coordinate your care and this is typically a Rheumatologist.
Another important part of living with lupus is that you see your doctor regularly, even when you’re feeling good. Regular visits to the doctor can help you manage your condition by looking for changes in symptoms, predicting and preventing flares, changing your treatment plan as needed, and detecting side effects of treatment. Specialists who may be part of your healthcare team include the following.
- Rheumatologists (doctors who specialize in arthritis and other diseases that cause swelling in the joints)
- Clinical immunologists (doctors who specialize in immune system disorders)
- Nephrologists (doctors who specialize in kidney disorders)
- Hematologists (doctors who specialize in blood disorders)
- Dermatologists (doctors who specialize in skin diseases)
- Neurologists (doctors who specialize in problems with the nervous system)
- Cardiologists (doctors who specialize in heart and blood vessel problems)
- Endocrinologists (doctors who specialize in gland and hormone problems)
- Occupational or physical therapist
- Social workers
Medicines that your doctors may prescribe include aspirin or similar medicine to treat swollen joints and fever as well as creams for a rash. For severe cases of lupus, medical treatment may include immunosuppressive drugs, anti-malaria drugs, corticosteroids, and chemotherapy drugs.
For Women with Lupus
Two concerns particular to women with lupus are pregnancy and contraception.
- Pregnancy: Even though pregnancy in women with lupus is considered high risk, most women with lupus can and do have healthy babies. They are encouraged to seek counseling before becoming pregnant, to see their doctors often, and to be prepared for a flare during pregnancy.
- Contraception: According to recent studies, oral contraceptives, or birth control pills, are safe for women with lupus. Reliable birth control is necessary for women who do not wish to become pregnant and for those who are taking medicines that could be harmful to an unborn baby. Women should asked their doctor if any of the medicines that they’ve been prescribed carry such risks.
Living with Lupus
Because there is no cure for lupus, learning to live with disease and manage its symptoms will help you protect your health and maintain a good quality of life. A critical step in managing the symptoms of lupus is learning to recognize the warning signs of a flare. If you treat or stop these warning signs, you may be able to prevent a flare or make it less severe. Some people experience the following before a flare:
There are a variety of things that can trigger a flare—such as exposure to sunlight or an infection—but the most common recipe for disaster is a combination of stress and fatigue.
Most people need a lot of extra rest – people need to pace themselves and minimize stress. When possible, work part-time or work from home in a self-employed setting because this allows individuals to set their own hours and build in time for rest.
Steps you can take to prevent a flare include:
- Learning the warning signs of a flare
- Setting realistic goals and priorities so that you don’t over exert yourself
- Limiting the time you spending in the sun
- Eating a healthy diet
- Finding ways to manage stress
- Getting enough rest and quiet
- Exercising moderately when possible (always consult your doctor before starting an exercise plan)
Having lupus can also be stressful and take an emotional toll. Many people manage stress by exercising and finding other ways to relax (yoga and meditation, for example). The support of family, friends, your doctors, community groups, and support groups can help you cope emotionally.
By staying actively involved in your own treatment, you’re more likely to have less pain, make fewer visits to the doctor, feel better about yourself, and remain more active. You’ll also learn to manage your energy, as it is likely limited, so that you can enjoy the events and activities that are most important to you.
Medications for Lupus
The cornerstone of treating any kind of lupus is cortisone-type drugs like prednisone. Lupus is pretty responsive to prednisone, but the problem is that it carries side effects. It’s best to start with a high dose and control the disease for a few weeks and then rapidly taper the dose if you can. It’s nice to get the dose to zero if you can, but that rarely happens.
Side effects of prednisone, aside from cosmetic changes like acne, face puffiness, and weight gain, prednisone can increase the risk of infection and diabetes, cause bruising and bone loss, and increase blood pressure. Prednisone can also exacerbate personality characteristics—so a cheerful person might become almost manic, whereas a more gloomy person might become extremely depressed.
Other types of medications used to manage the symptoms of lupus include the antimalarial medication such as Plaquenil® (hydroxychloroquine) or Aralen® (chloroquine). These drugs decrease autoantibody production and can help with skin rashes, mouth ulcers, fatigue, and joint pain. They may take a few months to improve symptoms (unlike the rapid response produced by prednisone). The side effects of antimalarial drugs are fairly mild and may include stomach upset and skin discoloration.
Immunosuppressive medications are also used. These include the chemotherapy agents Cytoxan® (cyclophosphamide) and Rheumatrex® (methotrexate) or another drug called Imuran® (azathioprine), which was designed to prevent the rejection of transplanted kidneys. Immunosuppressive medications are used to control inflammation and an overactive immune system. They are often used when prednisone fails to bring symptoms under control or when someone cannot tolerate high doses of prednisone. These drugs can cause severe side effects such as hair loss, sterility, and liver damage.
Monoclonal antibodies, which are targeted drugs that disrupt activation of B lymphocytes. Benlysta® (belimumab) is an intravenous drug given on a monthly basisIt takes about four to six months to produce a response, but it can reduce the need for prednisone in some people.
Most people with lupus take at least one if not several medications to manage the symptoms of the disease. Even Susie, who had been mostly asymptomatic, takes antimalarial medication.
The Big Picture
For many people, living with lupus means learning to live with disease symptoms and the side effects of medication. It can be challenging to strike a happy balance, especially when the disease is a bit like a moving target.
- Minimize stress.
- Build in time for plenty of rest.
- Maintain a healthy weight. This is challenging when taking steroids, but Dr. Hahn recommends at least not letting weight get into the obese range.
- Maintain aerobic conditioning for even just a few minutes each day.
- Eat a heart-healthy diet.
- Avoid prolonged sun exposure and wear sunscreen, a hat, and ultraviolet-protective clothing.
Systemic lupus erythematosus (SLE or lupus). Centers for Disease Control and Prevention website. Available at: http://www.cdc.gov/arthritis/basics/lupus.htm.
National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health_Info/Lupus/do_i_have_lupus.asp.
Lupus: What Is Lupus? National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp.