BEIJING -- The Zhangs spent last spring in adjacent hospital beds, hooked up to intravenous drips, fighting to overcome SARS. On the afternoon the young couple were discharged after more than a month of treatment for the deadly pneumonia, they celebrated their survival with a seafood lunch.

"Our health had never felt so precious," recalls Zhang Xuewei, a 31-year-old nurse. "After what we'd been through, nothing seemed scary."

Soon, both complained of a dull pain that radiated from their heels when they walked. For her, the pain gradually spread to her hips and knees. For her husband, 25-year-old Zhang Fan, the ache that developed in his hips became bad enough that he had to avoid stairs.

Today, she's in a wheelchair. He should be using his crutches but seldom does because they "can't prevent what is inevitable," he says. "Our bones are dying."

In China, a debilitating and often irreversible bone disease called avascular necrosis has struck many of the people who were treated for severe acute respiratory syndrome, or SARS. The primary cause is one of the main SARS treatments: the corticosteroids that flowed from intravenous drips into the veins of thousands of patients to prevent them from suffocating from inflamed lungs.

In Beijing, where the problem appears by far the worst in the world, orthopedic surgeons estimate that a third of the city's 2,500 former SARS patients are in the grips of avascular necrosis (also referred to as osteonecrosis). Symptoms typically begin with stiffness or pain in the hip, knee, ankle or shoulder joints, and often culminate in the crumbling of those bones, requiring grafts or joint replacements. Even in milder cases, people can end up with arthritis bad enough to bring athletic endeavors such as running to a lifelong halt.

It has long been known that steroids can lead to avascular necrosis. Doctors take that risk because steroids can also make a highly effective treatment. Many doctors who treated SARS are convinced the drugs saved lives. Steroids were administered in every major city where the respiratory disease struck.

But when it came to deciding which SARS patients should receive the drugs, what the dosage would be, and -- perhaps most important -- how long the treatment should last, practices in one city differed radically from the next. In Beijing, a picture is emerging of a medical system that turned to corticosteroids with zeal bordering on recklessness, according to interviews with intensive-care clinicians, orthopedic surgeons and patients there. Hard questions are also being raised in Hong Kong, where the bone disease has appeared in 14% of more than 850 former SARS patients who have been screened with magnetic resonance imaging.

In the neighboring Chinese province of Guangdong, where the SARS outbreak began, only a few cases of avascular necrosis have surfaced. In Taipei, Singapore, Hanoi and Toronto, health authorities say they are unaware of SARS-related cases of the bone disease, though they haven't done follow-up studies specifically testing for the disease, as Chinese cities are now doing. Those studies can catch early signs of a disease that sometimes takes a year or two before causing symptoms. That some patients in China are already experiencing the crippling effects of the disease is a sign of how much worse the situation is there.

The way doctors used steroids to treat SARS highlights other troubling lessons from that outbreak. In contrast to the global collaborative effort that hunted down the virus that causes SARS, the sharing of information about treatments for the virus was weak. Many SARS doctors said they were unaware of how steroids were used or how many patients contracted avascular necrosis in cities outside their own. Since this was a new disease, there was of course no clinical information to indicate whether the steroids might interact badly with the SARS virus itself, maybe even heightening the risk of avascular necrosis. Similarly, doctors lacked information on how the steroids would interact with other treatments. Some doctors hypothesize that ribavirin, an antiviral drug widely prescribed against SARS, might have magnified the effect of corticosteroids in causing avascular necrosis, since ribavirin destroys red blood cells that carry oxygen to people's bones.

Clinicians in Beijing say a course of the steroid methylprednisolone routinely lasted more than a month -- twice as long as what doctors said they typically used in Vietnam, Taiwan and Canada. Whereas physicians in Hanoi and Taipei say they gave steroids only to the most serious cases and rarely exceeded cumulative doses of 2,000 milligrams of methylprednisolone, some Beijing hospitals gave the drugs to all SARS patients. Cumulative doses were routinely twice as high and in some cases five times as high.

While doctors in Toronto often used cumulative dosages of 3,000-4,000 mg -- comparable to what some Beijing doctors prescribed -- they limited the courses to just nine days. The absence of avascular necrosis cases in Canada underscores the critical role that treatment duration appears to play in causing the bone disease. In Singapore, government officials and physicians declined to provide details about the treatment of SARS patients.

Most doctors say they plan to use steroids if SARS returns, though many of the same doctors admit they are uncertain that the drugs really help, or what the optimal dosage should be. A researcher in Taiwan this month was infected with SARS at a military laboratory, becoming the world's first confirmed case since August. He is recovering and apparently didn't spread the disease.

Use of steroids to treat SARS began auspiciously. On Dec. 22, 2002, Zhong Nanshan, director of the Guangzhou Institute of Respiratory Diseases, saw a 41-year-old patient with a severe case of pneumonia that wasn't responding to antibiotics. No one knew it at the time, but the man was one of the first cases of SARS.

Dr. Zhong determined that the pneumonia was largely caused by the patient's own immune system. Some exotic pathogen was creating such a violent reaction from the body's defenses that they were attacking the man's lungs. Dr. Zhong prescribed corticosteroids, which work by suppressing the immune system. Within three days or so, the white haze that clouded X-rays of the man's lungs began to dissipate and his breathing became more relaxed.

Dr. Zhong, who would treat scores more cases and would be recognized for pioneering steroid treatment of SARS, says he usually used about 160 mg of corticosteroids per day for seven to 10 days, and then tapered the doses down to zero over an additional week. He endorsed bigger doses, known as "pulses" of steroids, for patients in grave condition, but even in those cases limited such doses to just a few days and kept the total course of treatment to under three weeks, he says.

After poring over his data, he says he could see that success with steroids was far from guaranteed. But he concluded that 53% of the patients he treated with the drugs showed improvement within four days.

In March, as SARS spread in Hong Kong and Beijing, Dr. Zhong visited those cities to tell doctors what he knew. Hundreds of physicians attended his presentations. While his slides mentioned precise dosages he'd used, he didn't dwell on the matter in his talks, assuming other doctors also knew the rule of thumb he'd been taught for treating severe asthma attacks: roughly 2 mg of steroids for each kilogram, or 2.2 pounds, that a patient weighed.

In hindsight, he says he wishes he had "made it more clear what the optimal dose should be." He says he was surprised to learn of the size and duration of dosages that some doctors in Hong Kong and Beijing were using. In Beijing, doctors were turning to steroids at the first sign of fever, going against his advice to use it only for patients who had developed difficulty breathing and showed evidence of "shadowing" in their chest X-rays.

"Those dosages were wrong, really wrong," says Dr. Zhong. "Some of the doctors found, `Well, if you get good results with one kind of dose, why not go higher?' " he says. "They didn't think of the side effects."

Guo Limin, the chief physician at Beijing Ditan Hospital, was one of the first doctors to sense how widespread the side effects would be. Of the dozens of SARS patients referred to his team from other hospitals, many had already received extraordinary quantities of steroids, he says. Dr. Guo says one patient had been injected with a cumulative dose exceeding 8,000 mg. As a result, his immune system was depressed to the point that he couldn't defend against a nasty secondary lung infection. His doctors, Dr. Guo says, mistook the new infection for a resurgence of SARS pneumonia and gave the patient still more steroids.

By the time Dr. Guo received the man, huge black cavities had appeared in his lungs. The patient survived, but the bones in his hips did not: Both joints have been replaced with metal ones.

"Some doctors misinterpreted the advice from Guangzhou. They used steroids without any analysis," Dr. Guo says. Doctors who doled out megadoses "were acting blindly."

It's not clear how steroids lead to avascular necrosis. The leading theory is that prolonged use causes the accumulation of fat droplets in the blood, and the swelling of fat cells inside bone marrow. The upshot: Tiny blood vessels become clogged or crimped, starving the bones of oxygen. The top of the femur, the big leg bone that joins the hip, has relatively few blood vessels and is especially vulnerable.

As the number of former SARS patients complaining of bone and joint pain increased, the Beijing government in October set up a medical team to investigate. The results were alarming.

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Magnetic resonance imaging performed on a random sample of more than 100 health-care workers treated for SARS showed that more than 30% had the bone disease, says Xu Lin, the orthopedic surgeon heading the team. Citywide, "the rate is probably close to one-third," says Dr. Xu, who adds that steroid dosages in many of the cases "were terrifying." Doctors found a similar rate after screening SARS-infected health-care workers at Chaoyang Hospital, says Wang Qingyi, the hospital's director of orthopedics. Doctors say they are unaware of any cases among SARS patients who didn't receive steroids.

A deputy director of the Beijing Municipal Health Bureau, Deng Xiaohong, says it is too early to declare with certainty the citywide rate. Individual hospitals report a prevalence ranging from 10% to 50%, she says. The government recently began a monthlong program to screen the city's roughly 400 health-care workers who survived SARS, but it doesn't have plans to screen other SARS survivors, she said.

Mr. and Mrs. Zhang didn't know the treatment for SARS would prove harmful itself. At no point during their illnesses did either experience serious trouble breathing, or the need for respirators. Nonetheless, each was started on IV injections of methylprednisolone the day after being admitted to China-Japan Friendship Hospital, they said.

With the high number of SARS patients at the hospital, and the head of the intensive-care unit and other health-care workers sick as well, doctors and nurses from other departments were called to the front line, including ones with little experience treating respiratory illnesses, they said. The Zhangs say an ophthalmologist was among the doctors who looked after them.

In total, Mrs. Zhang received more than 2,000 mg of steroids and Mr. Zhang received about 3,500 mg -- doses that were low for Beijing. But the treatment dragged on for weeks: Mrs. Zhang took steroids for 42 days straight, her husband for 31 days.

During the treatment, Mr. Zhang says his limbs swelled so much he could barely stand up at his bedside. He and his wife say their pulses raced at more than 120 beats a minute while they lay still, a side effect also attributed to steroids. "I was adamant that they reduce the dosage," he says. Doctors replied that they couldn't change the dosage without permission from the respiratory-department head.

The Zhangs could hear another SARS patient in their ward, the head of intensive care, ordering a reduction in his steroid doses. "You're ruining my body," the man pleaded, according to Mr. Zhang. The man received much higher dosages than Mr. Zhang and now has avascular necrosis, too. "He's never left the hospital," Mr. Zhang says. The chief of the hospital's respiratory department, Lin Jiangtao, declined to discuss the Zhangs' case and said other doctors were responsible for treating the intensive-care physician, who couldn't be reached for comment.

Of the hospital's nine health-care workers who came down with SARS, five have avascular necrosis. "I believe the steroids may have helped," Mrs. Zhang says. "It's just that it was too much, for too long."

She and her husband are living at the hospital again, sharing a room with a single hospital bed. Wearing flannel pajamas, she sits on the sofa they use as a second bed. She is able to walk, but rides in the wheelchair to avoid putting weight on her hip joints and knees. Like several other patients who spoke about their condition, the Zhangs say they aren't angry at their doctors.

"We don't blame anyone," she says. "We want the Beijing government or the central government to actively face up to avascular necrosis," she says.

Mr. Zhang and his wife have decided to have a child; she's now two months pregnant. They understand that the pregnancy may complicate her condition. Mr. Zhang has other concerns, too. "I'm afraid I'll be unable to hold the child once he starts to get big because my bones would crumble," he says.

"But we resolved to do it," he says. "It's something good. There can still be a lot of good in our lives."

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                           Lingering Effects 
 
   Percentage of SARS cases in which victims subsequently contracted 
avascular necrosis (AVN*), a debilitating bone disease. 
 
                        SARS        RATE 
   COUNTRY             CASES       OF AVN 
 
   China 
    Beijing            2,521         33% 
    Hong Kong          1,755         14 
    Guangzhou          1,512          3 
   Taiwan                346          0 
   Canada                251          0 
   Singapore             238          0 
   Vietnam                63          0 
   U.S.                    8          0 
 
   * Rate applies to number of SARS patients tested for AVN; in other 
countries, follow-up tests didn't include specific screening for AVN. 
    

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