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Pain in every little move he makes

May 12, 2003|Timothy Gower | Special to The Times

People who meet Brian MacKenzie for the first time don't notice anything unusual about him until he turns his head. Then, inevitably, he's asked, "Got a stiff neck?" When the 30-year-old financial consultant from Hermosa Beach backs up his car, he has to rely on the side and rearview mirrors. Peering up at skyscrapers or tilting down to sip from a straw are awkward too.

MacKenzie has a disease called ankylosing spondylitis, or AS, that has made several bones in his upper spine fuse together. Along with the loss of flexibility, MacKenzie has battled severe pain in his spine and hips since he was diagnosed at age 12. A few years ago, he had his right hip replaced; AS had worn away all its cartilage and had begun eroding the bone.

Most people haven't heard of AS, but at least 250,000 Americans have the condition; the Spondylitis Assn. of America says the figure may be as high as 1 million. AS usually strikes before age 35, and males are two to three times more likely than females to be diagnosed. Doctors aren't sure why men are more vulnerable or what causes the problem. There is no cure, but physicians say new medications offer hope.

The condition is often called arthritis of the spine, but it can spread to the shoulders, hips and other joints. The pain and stiffness that characterize AS are caused by inflammation that occurs at the point where tendons and ligaments meet bone. Some patients have difficulty breathing because the joints connecting the ribs to the spine stiffen. Others develop inflammation in the eyes and aorta, or foot problems, such as Achilles' tendinitis and plantar fasciitis. AS sufferers often walk with a forward-leaning stoop.

As the disease progresses, explains UC San Francisco rheumatologist John C. Davis Jr., joints can actually meld into one another. "The spine can become totally fused," says Davis. Since the spine is involved in most major body movements, advanced AS affects nearly every aspect of life, he says. According to a 2002 survey by the Spondylitis Assn., about 60% of AS patients say the disease makes it difficult to walk, get into a car, sleep or have sex. One in 4 report that they had to change jobs or careers.

Although the cause of AS remains a mystery, scientists believe the body's immune system develops a glitch and attacks its joints with inflammatory molecules. The majority of AS patients are born with a gene called HLA-B27, though recent studies suggest that it probably interacts with other genes to make a person susceptible to the condition. Because most HLA-B27 carriers never develop AS, researchers are trying to figure out why others do. "There's very likely an environmental trigger," says rheumatologist Michael Weisman of Cedars-Sinai Medical Center. Weisman suspects that exposure to some common form of bacteria may be the culprit.

The Spondylitis Assn.'s survey also found that more than half of AS patients live with their symptoms for five years before they're diagnosed. One reason for the delay is that many people -- even doctors -- mistake AS for common back pain. But the symptoms of AS aren't the same. The pain and stiffness are usually most intense right after getting out of bed, but they're somewhat relieved by physical activity. Unlike common back pain, rest makes AS feel worse. If you're under 35 and have these symptoms for longer than three months, see your physician and consider making an appointment with a rheumatologist, Davis says.

Physical therapy and low-impact aerobics can help ease stiffness in AS patients. Most patients take non-steroidal anti-inflammatory drugs, or NSAIDs, such as ibuprofen, aspirin or the prescription drugs Arthrotec and Celebrex, which offer modest relief of symptoms. However, two drugs used to treat rheumatoid arthritis may bring greater relief and actually slow the disease's progress. Davis and several colleagues published a study in the New England Journal of Medicine last year showing that 80% of patients using the drug Enbrel (generic name: enteracept) had significantly less pain and stiffness.

Although more research is needed, Davis says there is some evidence that Enbrel may delay the fusing of bones in AS patients. If true, detecting AS early will become more important than ever.

The Food and Drug Administration is considering whether to approve Enbrel for the treatment of AS; a decision is expected by June or July. However, many doctors already prescribe Enbrel and another drug, Remicade (infliximab), "off-label" to treat AS. MacKenzie began taking Remicade recently and says it has cut his pain level in half.

MacKenzie has had to give up pickup basketball -- his body can't take the pounding -- but he still swims, cycles or surfs at least three or four times a week. He's upbeat and well-informed about AS, suggesting that for people who have this painful condition, maintaining the right frame of mind helps.

AS, says MacKenzie, "can be very debilitating, but if you have the right attitude and stay active, it doesn't have to be."


Timothy Gower can be reached by e-mail at The Healthy Man runs the second Monday of the month.

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