Systemic Lupus Erythematosus
Lupus and 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. Many people with lupus experience increased
fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just
before a flare. Developing strategies to prevent flares can also be helpful,
such as learning to recognize your warning signals and maintaining good
communication with your doctor.
It is also 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, and the importance of structured exercise and rest, as well as 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.
Learning to recognize the warning signs of a flare can help the patient take
steps to ward it off or reduce its intensity.
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, and 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, and support groups. Participating in a support group can provide
emotional help, boost self-esteem and morale, and help develop or improve
coping skills. (For more information on support groups, see the "Additional
Resources" section at the end of this booklet.)