Lupus (Systemic Lupus Erythematosus) - What Happens

What Happens

The outlook for people with lupus has improved as better treatments have been found. Now, nearly 70% of people with lupus live 20 years or more after they are diagnosed with the condition.⁶

The course of lupus varies by individual and is hard to predict because symptoms come and go. Lupus usually develops so slowly that a person may not notice the symptoms for a long time.

Periods of time when you have lupus symptoms are called flares or relapses. Periods of time when your symptoms get better are called remissions. On occasion, lupus develops and progresses rapidly. Flares and remissions can occur abruptly, unexpectedly, and without clear cause. There is no way to predict when a flare will happen, how bad it will be, or how long it will last. When you have a lupus flare, you may have new symptoms in addition to those you have had in the past.

Children can get lupus, though it more commonly develops in the teen years or later. Lupus in children appears to be more severe than in adults when vital organs, such as the kidneys and heart, are involved. This may be due to age-related differences in the disease, a child's stage of development, or differences in access to treatment.

People with lupus commonly lead a less active lifestyle than do people who do not have lupus, due to the fatigue, joint pain, and decreased aerobic capacity caused by the disease.^{5, 8} Aerobic capacity is the ability to do exercise such as walking and swimming that pumps oxygen to your heart and muscles.

Some people with lupus develop complications such as:

• Birth control and pregnancy issues.
• Kidney problems.
• Heart problems.
• Lung problems.
• Blood-related problems.
• Nervous system problems.
• Mental health problems.

Living with lupus

Most people with lupus are able to continue their usual daily activities. You may find that you need to cut back on your activity level, get help with child care, or change the way you work because of fatigue, joint pain, or other symptoms. You may find that you have to take time off from daily activities entirely.

Most people with lupus can expect to live a normal or near-normal life span. This depends on how severe your disease is, whether it affects vital organs (such as the kidneys) and how severely these organs are affected.

Lupus usually does not cause joint damage, crippling, or deformity, which may happen in people who have rheumatoid arthritis, another autoimmune disease.

Medications used to treat moderate to severe lupus have side effects. It can be difficult to tell what problems are part of the natural course of the disease and what problems are due to effects of medications used to control the disease.

In the past, lupus was not well understood. People who had lupus died younger, usually of problems with vital organs. Now that the disease can be treated more successfully, life expectancy with lupus has increased significantly. Over 90% of people with lupus live at least 5 years after diagnosis. ⁹ Nearly 70% live at least 20 years after diagnosis.⁶