Thinking, Memory and Behavior

In about half of people with lupus, the disease attacks the brain and spinal cord. Lupus can also affect the peripheral nervous system, which is made up of the nerve fibers that give skin and muscles the power for feeling and movement. These developments can be very frightening and frustrating. Thankfully, there are steps a person can take to make things easier. Doctors who specialize in these complications are called "neurologists."

What is the most common kind of lupus brain involvement?
Many people with lupus—at least one in five—have trouble thinking clearly at some point and experiences memory problems, confusion, fatigue, or difficulty expressing thoughts. Called cognitive dysfunction, the condition likely occurs because blood stops flowing as smoothly to the brain as it should. This also can happen when lupus antibodies cross the "blood-brain barrier," directly damaging brain cells in areas that store memories and other important information. Cognitive dysfunction may come and go, but often steadily worsens over time.

What is "lupus fog?"
A part of cognitive dysfunction, some people with lupus get spells of "fogginess" when, for several seconds or minutes, they can not get to information that they know is in their heads. They may read the same sentence over and over again, for example. Or struggle with a normally easy task, like balancing a checkbook or dialing a familiar number.

What can be done about cognitive dysfunction and "lupus fogs?"
Reassurance from loved ones helps a lot. So can behavioral counseling, physical or speech therapy, biofeedback, techniques for relaxing the body and mind, and concentration strategies. A lupus diary can be useful to track when fogs happen and what works for dealing with them. Medicines may lessen the fatigue or depression that makes thinking hard. Doctors are learning a lot about how lupus antibodies hurt brain cells and are testing medicines for dementia that might some day help people with lupus.

Do other brain problems happen in people with lupus?
Blood flow to the brain feeds brain cells with nutrients (food) and oxygen. Strokes occur when this blood flow is interrupted and brain cells die from the lack of oxygen, causing symptoms such as tingling sensations and problems with vision, speech, and movement (including paralysis). People with lupus have a higher risk for stroke, especially the third or so who have "antiphospholipid antibodies" that make blood "sticky" and more likely to clot and stop or slow blood flow to the brain. Although uncommon, inflammation in the spinal cord or brain's blood vessels also happens with lupus and can lead to paralysis, seizures, difficulty judging reality, and loss of consciousness.

Can lupus change emotions and behavior?
Some people with lupus have mild but noticeable changes in behavior such as unusual feelings of fear or lack of fear, or loss of interest or curiosity. More commonly, the fatigue and pain of lupus is draining to the point that a person changes his or her outlook on life. Corticosteroids and other lupus medicines sometimes make matters worse by causing weepiness or other exaggerated feelings. The "emotional rollercoaster" of lupus is something that always should be discussed with a doctor.

How is lupus brain involvement diagnosed?
A doctor can do a physical examination, test blood and spinal fluid, or take imaging tests or electrical studies of the brain. These sometimes help in figuring out what is going on. But a diagnosis often is difficult to make because infection and side effects from medicines can lead to the same signs and symptoms as active brain lupus, and no single test can show without question that lupus is the cause.

Will a person with lupus and brain problems be OK?
No matter whether the problem is mild or severe, there often are effective and surprising ways of handling lupus thinking problems, memory difficulties, and behavior issues. Counseling and anti-depressant medicines help many people. Support groups are a good place to hear about ideas on concentrating better, remembering important things, and thinking more clearly. Knowing that others live with the scariness and unknowns of lupus can also make having the disease less lonely. With time and luck, the researchers hard at work figuring out what can be done to stop lupus from damaging the brain will have some solid answers.

Revier: Meggan Mackay, MD
Spring 2006

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.

Source: S.L.E. Lupus Foundation

Updated: July 2013


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