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Patients in quandary regarding mystery of drugs, jaw malady

first_imgOver the past 10 years, millions of patients have taken a class of drugs that can prevent agonizing broken and deteriorating bones. The drugs seemed safe and have transformed life for patients with cancer and with osteoporosis. But recently, there have been reports of a new and serious side effect: death of areas of bone in the jaw. Everyone agrees that the condition, osteonecrosis of the jaw, is a rare complication and everyone agrees that its rate of incidence is not known. Among the 500,000 cancer patients who take the drugs because their disease is affecting their bones, it is estimated that 1 percent to 10 percent may develop the condition. And doctors say that the level of alarm among patients, as well as some doctors and dentists is alarming in itself. “The whole thing has spun out of control,” said Dr. Ethel Siris, director of the Toni Stabile Osteoporosis Center at Columbia University. Meanwhile, some patients who have not developed osteonecrosis decided to stop taking the drugs until more is known. “I’m giving myself a little holiday,” says Judy Langley, a 63-year old translator who lives in Anacortes, Washington. She’s been taking the one of the drugs for seven years for osteoporosis. The FDA is aware of the issue, said Laura Alvey, a spokeswoman, and has required that all bisphosphonate labels disclose the link to osteonecrosis of the jaw. The problem, though, is that bisphophonates are not easily discarded for good. Cancer patients, mostly patients with multiple myeloma and breast cancer patients whose cancer has spread to their bones, take the drugs, Zometa, or Aredia, an older drug, intravenously. The drugs, doctors say, largely prevent excruciating bone pain and fragile bones that break like kindling. Osteoporosis patients, take bisphosphonates as pills, in much lower doses. Those drugs, Fosamax, Actonel, and Boniva, reduce the risk of debilitating fractures of the spine and broken hips that can send people into a steady downward spiral. Yet even if patients stop taking the drugs, they are not free of them. Bisphosphonates remain in bone for years. And no one knows how long the osteonecrosis risk remains.160Want local news?Sign up for the Localist and stay informed Something went wrong. Please try again.subscribeCongratulations! You’re all set! AD Quality Auto 360p 720p 1080p Top articles1/5READ MORE11 theater productions to see in Southern California this week, Dec. 27-Jan. 2As for the millions of osteoporosis patients who take lower doses of the drugs, the condition seems less common but no one knows how much less. Some oral surgeons have a couple of dozen cases, but their clinics have become referral centers. Only 15 cases have been reported in the medical literature. So, for now, doctors and dentists are finding themselves in a confusing situation. Firm data are scarce to nonexistent, studies that may provide answers are only about to begin, and medical organizations and drug companies are scrambling to provide guidance, often based only on hunches and guesses. Some dentists are refusing to treat patients taking the drugs, and trial lawyers are lining up to sue the drug makers, saying they failed to adequately warn patients. Doctors say they are starting to be besieged by worried patients who are hearing about the condition. Their questions, though, have no answers. Patients want to know whether they should stop taking the drugs. They want to know whether they should have invasive dental procedures, like tooth extractions and implants, which appear to set off the condition. They want to know whether the osteonecrosis of the jaw can be treated and, if so, how likely is it that a person will recover. last_img read more