There are two ways to think about lupus across the lifespan:
Systemic lupus erythematosus (SLE or "lupus"), as described in medical papers, on the internet, and in public media, generally refers to the disease as seen at its peak onset ages: That is, lupus most often appears when a person is between 15 and 35 years of age – typically with symptoms of arthritis, rash, hair loss, sun sensitivity, and kidney and blood disease. The illness is subtly different when it appears in people of other age groups. (A disease called "neonatal lupus," which affects some newborn infants, is not actually a form of SLE. This is discussed below.)
Children who develop lupus before adolescence are often found to have a genetic abnormality that predisposes them to the disease. Otherwise, the symptoms and treatments do not differ significantly from patients of other age groups. In very young children, the disease tends to be a bit be more severe and to have atypical symptoms (such as severely enlarged lymph nodes) as compared to the “classic” lupus symptoms found in older people. Because young children are still growing, the treatments they receive, which usually include high doses of corticosteroids, may lead to short stature. Their schooling and other social and intellectual development may be disrupted, as it would be for any child suffering a serious illness. While about 90% of older lupus patients are female, the percentage of females in very young patients may be closer to 60% or 70% (although this figure is not agreed upon by all clinicians and researchers).
As noted above, childhood lupus should not be confused with the illness known as “neonatal lupus,” which is a separate condition. A small proportion of newborns of mothers who have high titers of anti-Ro/SSA and anti-La/SSB antibodies are susceptible to neonatal lupus. This is not actually a form of systemic lupus erythematosus. Rather, it is brought about by the mother’s antibodies that are passed through the placenta to the child. These vanish in the infant after about six months. About 25% of children of mothers who have high titers of anti-Ro/SSA and/or anti-La/SSB antibodies (but not children of mothers with low titers) will develop a transient rash and/or blood abnormalities that are generally not harmful and that heal on their own. The rash tends to frighten people, but it is not serious. Most of these children need no treatment at all, and they do not develop lupus later in life. A very small percentage of children of mothers with these antibodies develop a serious heart problem, usually of rhythm, which may require a pacemaker. These conditions are almost always identified before birth. Neonatal lupus is not SLE, and it does not become SLE in later life.
People who develop lupus during adolescence tend to have the typical characteristics of lupus that begins in adulthood. However, they are somewhat more likely to have severe symptoms, and they are more likely to have complications of kidney disease. The particular medications doctors prescribe to teens (and the degree to which these patients accept those prescriptions), may differ from prescriptions given to patients of other ages. This is because teenagers commonly have concerns regarding socialization, body image, psychological state, and competitiveness in athletics and in school, and are also more likely to experiment with alternative treatments and illicit self-medications than are adults.
Most commonly, SLE develops when a person is a young adult (18 to 35 years old). In addition to the usual features of the illness, there are many other considerations in patients of this age group that will influence a patient’s and doctor’s choices for medical care, including:
Illness that begins at a later age tends to be milder and less frequently complicated by kidney problems.
However, the normal problems of aging begin to dominate the conversation regarding appropriate treatment. These include:
Early in its course, SLE tends to be dominated by the classic symptoms that bring patients to physicians:
Treatment is more likely to be intense (high doses of medication ) and the response rapid.
After a decade or so, flare-ups (also called "flares") tend to be milder and less common, because they are treated before they get out of control. Some other characteristics are that these patients:
Weight gain, osteoporosis, infertility and, in some cases, decreased renal (kidney) function, may become issues that are different from what doctors call “active” disease. Patients who have had lupus for several decades generally have not suffered severe complications of “active” disease (such as complete kidney failure, stroke, heart failure or amputation). Their problems relate more to long-term side effects of treatment, which may include:
The above statements are generalizations based on what happens when one examines large populations of patients. More than almost any other illness, lupus is heterogeneous. That is, it is very hard to find two patients who experience the disease in precisely the same way. For this reason, these generalizations do not apply to any one particular individual. If you wish to know what will happen to you or a loved one with lupus, your best answer will come from reviewing the specifics of your case with your doctor. Consider your symptoms, treatment, the duration of both, and your personal hopes and desires. Then you and your doctor can chart the best course for you to achieve your future goals.
Michael D. Lockshin, MD
Director Emeritus, Barbara Volcker Center for Women and Rheumatic Disease