Today in PT—March 3, 2008
Robin Benick, PT, MA, will never forget one patient who was in the hospital due to a severe lupus flare. The patient, who was in her 30s, was experiencing psychosis as a result of the disease and side effects from her medication. The psychosis was so extreme that the patient was screaming and punching at hospital staff from her bed.
Despite her reservations, Benick and the PT team entered the room. They knew that unless the patient started moving, the woman would be at risk of developing stiffness, contractures, weakness, and atrophy, in addition to medical problems including pneumonia and blood clots. The team managed to help the woman get back up on her feet — quite an accomplishment at that time.
Benick, clinical supervisor of the Rehabilitation Network at Hospital for Special Surgery in New York, worked with the woman while she was in the hospital, and then saw the patient again eight months later.
“She was a totally different person,” Benick says. “It was encouraging and taught me that no matter how bad things may be for a patient, if you stick with them you really can give them a chance to get better.”
Although this case was more extreme than most, it illustrates the reality that lupus is a somewhat mysterious and complex disease. The symptoms vary from person to person and can wax and wane. It may mimic other diseases or illnesses and it is difficult to diagnose. In spite of these challenges, researchers and clinicians are discovering new weapons against the disease. In addition to medication, patients with lupus may be able to use exercise to counteract some of the damage caused by the disease. PTs can have a vital role in providing guidance about the right types and amounts of exercise, and pitfalls to avoid.
About 16,000 Americans develop lupus each year, and roughly two million have been diagnosed with this autoimmune disease, according to the Lupus Foundation of America. Lupus, the Latin word for “wolf,” was originally named for its signature facial rash: Early physicians thought the photosensitive rash resembled the scar of a wolf bite. The red, butterfly-shaped rash is seen in as many as half of patients with lupus, and develops over the patient’s cheeks and bridge of the nose. In addition to the skin, lupus can cause inflammation and damage to various parts of the body, including the joints, heart, lungs, blood, kidneys, and brain.
About 90 percent of people with lupus are women, and it is more common in African-Americans, Latinos, Asians, and Native Americans than it is in Caucasians. The cause is currently unknown, but scientists believe there is a genetic predisposition to the disease. There are certain environmental factors that can trigger lupus, such as ultraviolet light, infections, antibiotics, extreme stress, certain drugs, and hormones.
For some people, the symptoms are limited to skin rashes on the face, neck, and scalp. This is called discoid (cutaneous) lupus. But the most common, and most serious, type of lupus is called systemic lupus erythematosus. This form can affect almost any organ system of the body.
A small percentage of people can develop drug-induced lupus, which occurs after using certain prescribed drugs, such as hydralazine, which is used to treat hypertension, and procainamide, which is used to treat irregular heart rhythms. Symptoms usually fade when people stop taking the medication. Since there is no single laboratory test to determine whether someone has lupus, it can be difficult to diagnose.
The American College of Rheumatology has issued a list of 11 symptoms or abnormal blood tests of lupus to distinguish it from other diseases, and a patient must have at least four of these (not necessarily at one time) for a physician to suspect lupus. The criteria include rash, raised red patches, oral ulcers, arthritis, serositis, kidney disorders, neurological disorders, blood disorders, and positive tests for antinuclear antibodies or immunologic disorders.
Although lupus may seem like a daunting diagnosis, patients can experience periods of remission with no symptoms. The remission may last weeks, months, or even years. When patients experience a flare, or onset of increased symptoms, it can sometimes be traced to exposure to ultraviolet light, an infection such as a cold or fever blister, or, in some cases, a pregnancy.
Medication is one of the first lines of defense when patients experience a flare. One of the most common treatments for a flare is prednisone. If the patient is already taking a low dose, then the physician may increase the dosage to control the flare.
Although medication is often an effective treatment, experts are finding that exercise can be another powerful strategy in dealing with a patient’s physical and emotional health.
“In people with a chronic illness like lupus, maintaining their best possible level of physical conditioning is an advantage,” Benick says. “The stronger a lupus patient is prior to a flare, the less functional impact that flare is likely to have once it is over.”
Though a prescription for exercise seems simple enough, the symptoms of lupus can create significant motivation barriers for patients who want to stay in shape.
Typical programs may include gentle strengthening with light hand-held weights or resistive bands in addition to a flexibility strategy with gentle stretching and range of motion exercises. Benick also may discuss energy conservation strategies with her patient, such as writing a list of things needed ahead of time to avoid multiple trips up the stairs.
The physical therapy plan may include a multi-joint exerciser, a treadmill, or aquatic exercises. Benick warns PTs to make sure the water is not too warm because a higher temperature may induce fatigue in a patient with lupus.
“It is vital to avoid pushing them to the point of exhaustion,” she says. “They could be aversely affected for days if this happens. Monitor breathing and quality of movement and instruct patients to tell you if they are getting too tired.”
Balance training can be important because some patients with lupus develop steroid-induced neuropathies. Techniques such as yoga, Pilates, and Feldenkrais are being incorporated by PTs who are treating patients with this diagnosis. Benick commonly sees patients with lupus as they are coming out of a flare when they are deconditioned.
For those who can maintain a good baseline of physical fitness, exercise can improve the level of function during a flare, decrease stress on inflamed joints, reduce the impact of heart and lung problems from the disease, and improve the overall energy level. It also can have valuable emotional benefits.
“It is wonderful for their self-image and mental fitness,” Benick says. “Exercise can also help with depression. It’s my belief that people with chronic illnesses are happier if they keep moving.”
Although there are multiple benefits to exercising, she admits it is not unusual to come across patients with lupus who are worn out from fighting the disease. But for Benick, this challenge also makes her time with them so valuable.
“It is a tough patient group to work with because they are faced with so many complicating factors from the disease, but that is what makes it rewarding as well,” she says. “You can be a big part of helping them get back to where they want to be. You are really a partner in their well-being.”
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