Get Into the Loop

Thinking, Memory, and Behavior: How Lupus Affects the Brain

By Meggan Mackay, MD
Columbia University Medical Center, New York, NY
Jacobi Medical Center, Bronx, NY

What happens when lupus affects the brain?
One out of five people with lupus experiences headaches, dizziness, memory disturbances, stroke, or behavior shifts that result from changes in the brain or other parts of the central nervous system. These people have what is called "neuropsychiatric" or "central nervous system" lupus, possibly a result in part from lupus antibodies that attack nerve cells or blood vessels, slowing or interrupting the flow of oxygen-rich blood and injuring the nervous system. Symptoms develop depending on where (and to what extent) the damaged cells are located. Although brain involvement often signals a worse prognosis, researchers are making headway in figuring out how this happens, and what to do about it.

What's the most common kind of lupus brain involvement?
Cognitive dysfunction (not thinking clearly) occurs in up to half of people with lupus at some point, typically in those with mild to moderately active disease. The complication, characterized by confusion, memory problems, fatigue, and trouble expressing thoughts, tends to come and go over time. The cause is not known, although researchers suspect that blood-flow abnormalities and chemicals in the body called cytokines are often to blame. Sound emotional support and reassurance often help enormously. So can counseling (behavioral therapy), regular biofeedback, and medications targeted specifically to ease fatigue or depression.

Do other brain problems occur in people with lupus?
Yes, although they are not as common as cognitive dysfunction. Many people suffer from severe lupus headaches. Nearly 1 in 10 people with lupus develop blood clots as a result of the antiphospholipid syndrome (APS), which can temporarily or permanently rob oxygen from a part of the brain. Other major neuropsychiatric lupus problems include seizures, altered consciousness (excessive sleepiness, coma, stupor), inflammation of the spinal cord (aseptic meningitis) or brain's blood vessels (vasculitis), paralysis, movement disorders (tremor, balance problems), visual changes, and peripheral neuropathy (tingling or numbness of hands or feet), psychosis (inability to judge reality), and problems caused by drugs (usually infection-fighters) used to treat the lupus.

What can a person with lupus do about brain involvement?
Brain involvement in lupus can range from mild to gradually damaging to dramatically incapacitating over a short period of time. A diagnosis is challenging, with the cause of the problem often unclear and complex. Along with a physical examination and precise questioning by a doctor, testing of the blood and spinal fluid, brain imaging, and electrical studies (EEG) may be needed. The doctor should carefully consider other possible causes (infections, drugs, non-lupus disorders). A person with lupus brain involvement often benefits from a combination of emotional support, blood thinners, and anti-inflammatory medicines.

What is the outlook for people with lupus?
There isn't a cure yet, but every year researchers get better insights into lupus and come closer to uncovering more specific and less toxic treatments. In 1955, only 50 percent of people newly diagnosed with lupus were expected to live more than four years. By 1969, that figure for 50 percent survival extended past four years to 10 years. Now most people with lupus can look forward to a normal lifespan.

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