Guide to Lupus

Natural Therapies: Because of the nature and cost of the drugs used to treat lupus and the potential for serious side effects, many patients seek other ways of treating the disease. Some alternative approaches people have tried include:

• special diets
• dietary supplements
• fish oils
• ointments/creams
• chiropractic care
• homeopathy

Although these methods may not be harmful in and of themselves, and may be associated with symptomatic or psychosocial benefit, no research to date shows that they affect the disease process or prevent organ damage. Some alternative approaches may help the patient cope or reduce some of the stress associated with living with a chronic illness. If the doctor feels the approach has value and will not be harmful, it can be incorporated into the patient's treatment plan. However, it is important not to neglect regular health care or treatment of serious symptoms. An open dialogue between the patient and physician about the relative values of alternative therapies allows the patient to make an informed choice about treatment options.

Quality of Life

Despite the symptoms of lupus and the potential side-effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity.

Warning Signs of a Flare

Just before a flare, many people with lupus experience:

• increased fatigue
• pain
• rash
• fever
• abdominal discomfort
• headache
• dizziness

Preventing a Flare

Developing strategies to prevent flares can be helpful, such as:

• learning to recognize your warning signals
• maintaining good communication with your doctor

It is important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Results from a medical exam and laboratory work on a regular basis allows the doctor to note any changes and to identify and treat flares early. The treatment plan, which is tailored to the individual's specific needs and circumstances, can be adjusted accordingly. If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as:

• the use of sunscreens
• stress reduction
• the importance of structured exercise and rest
• birth control and family planning

Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccinations for some patients.

Women with lupus should receive regular preventive health care, such as gynecological and breast examinations. Men with lupus should have the prostate-specific antigen (PSA) test. Both men and women need to have their blood pressure and cholesterol checked on a regular basis. If a person is taking corticosteroids or antimalarial medications, an eye exam should be done at least yearly to screen for and treat eye problems.

Staying healthy requires extra effort and care for people with lupus, so it becomes especially important to develop strategies for maintaining wellness. Wellness involves close attention to the body, mind, and spirit. One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic disorder. Effective stress management varies from person to person. Some approaches that may help include:

• exercise
• relaxation techniques such as meditation
• setting priorities for spending time and energy

Developing and maintaining a good support system is also important. A support system may include:

• family
• friends
• medical professionals
• community organizations
• support groups

Participating in a support group can provide emotional help, boost self-esteem and morale, and help develop or improve coping skills.

Learning more about lupus may also help. Studies have shown that patients who are well-informed and participate actively in their own care:

• experience less pain
• make fewer visits to the doctor
• build self-confidence
• remain more active

Work With Your Doctor

• Seek a health care provider who is familiar with SLE and who will listen to and address your concerns.
• Provide complete, accurate medical information.
• Make a list of your questions and concerns in advance.
• Be honest and share your point of view with the health care provider and other members of the health care team.
• Ask for clarification or further explanation if you need it.
• Do not hesitate to discuss sensitive subjects (for example, birth control, intimacy) with your doctor.
• Discuss any treatment changes with your doctor before making them.

Related Resources

_{Source: NIH Publication No. 03-4178}

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