Arthritis Patients Seek Relief With Word-of-Mouth Treatment
Suddenly hundreds of thousands, maybe even millions, of Americans with arthritis are taking a combination of obscure nutritional supplements. Whatever made these pills the cure du jour, it’s certainly not the way their names roll off the tongue.
Glucosamine sulfate and chondroitin sulfate. Hard to imagine marketing whizzes brainstorming that, isn’t it?
It’s also not because a lot of arthritis specialists are pushing them on their patients. Mention health store pills to most doctors, and the response is likely to fall somewhere between a blank look and a condescending smile.
The real reasons, it seems, are a cleverly titled book, a hard-to-treat disease that afflicts 16 million Americans and that most elusive and powerful of marketing forces, a good buzz on the street. Or the golf course. Or wherever else men and women of a certain age gather and talk about what’s aching them.
Across the country, folks have seized on these over-the-counter pills as a new way to ease throbbing knees and hands, although the opinion of the medical establishment is, to put it politely, skeptical. Just how many of these people are truly finding relief is impossible to say, but clearly the experience has made believers of some.
Among them is Ralph Cushman, 49, a real estate lawyer in Anchorage, Alaska. Cushman is the kind of guy who lives to hike and fish. Those pleasures gradually grew difficult as old injuries stiffened his knees with arthritis, making walking painful. On a hunting trip two years ago, he got 500 feet up a mountain and could go no farther.
“It was heartbreaking,” he recalled. “Suddenly, I couldn’t deer hunt anymore. All the things I lived for were slipping away.”
His doctor told him nothing could be done. Take pain pills and live with it. Cushman limped to a bookstore. There he found something that, in his mind, changed his life.
“The Arthritis Cure,” written by Dr. Jason Theodosakis, lays out a program of exercise, diet and glucosamine and chondroitin. The book has sold more than 1.4 million copies since it came out last year.
Cushman followed its directions. “Within days, I realized it was making a tremendous difference,” he said. “Suddenly I could out-hike my boys rather than hollering for them to wait. There was just no question this was working. I assure you, you cannot make that kind of pain go away with a placebo.”
“Placebo” is just one of the words that comes up when arthritis doctors get onto this subject. They correctly point out that a belief something will work is often powerful medicine in itself. Indeed, when researchers test possible arthritis drugs, about 30% of the subjects feel better even when they are in the comparison group getting sugar pills. Some doctors suspect this may at least partly explain why people find relief from glucosamine and chondroitin.
“Patients invest time and money in them and they want them to work, so they are more likely to see a positive effect than a negative one,” said Dr. Jonathan Kay of the Lahey Clinic in Burlington, Mass.
Osteoarthritis, by far the most common form of the disease, develops when the cartilage that covers the ends of the bones in the joints begins to break down. Eventually, bone rubs against bone, causing pain and loss of movement.
Doctors’ usual advice is exercise to strengthen the muscles around the joints and weight loss to reduce some of the stress. Mainstream practitioners also usually recommend anti-inflammatory drugs. Among these are aspirin, Motrin and other over-the-counter painkillers and a variety of prescription medicines.
But many patients suffer despite these pills, and steady use can have serious side effects, such as stomach ulcers and liver damage. According to one estimate, anti-inflammatory drugs contribute to more than 7,000 deaths in the United States annually. Furthermore, the medicines do nothing to slow the progression of arthritis.
Unlike these drugs, glucosamine (pronounced glue-COSE-uh-mean) and chondroitin (conn-DROY-tin) are already present in the body as building material of cartilage.
Proponents theorize that taking extra glucosamine stimulates new cartilage production, while chondroitin slows its destruction. To hear them tell it, these supplements not only relieve or eliminate the pain, they can also stop and even reverse the disease. And they do all this with no side effects.
To which many arthritis experts reply: Show us the proof.
Most studies of glucosamine and chondroitin were done several years ago in Europe. In general, they suggest that the supplements work about as well as over-the-counter painkillers in easing the ache. In the test tube, they appear to stimulate and preserve cartilage.
However, skeptics note these studies were small, not particularly well done and didn’t combine glucosamine and chondroitin, which is the way most people now take them.
Dr. Doyt Conn, medical director of the Arthritis Foundation, said the supplements appear to be safe, and they may indeed do some good for some people, but his organization cannot recommend them until there are better scientific data.
“We have to be responsible to the public and give them what reliable information there is to make a judgment,” Conn said. “Right now, I don’t think that information is out there.”
Several U.S. studies are under way, sponsored by companies that make the supplements. The National Institutes of Health is also underwriting one, with results expected in about five years.
Even without the kind of evidence that doctors demand, many hurting people seem willing to try anything that sounds reasonable.
“Pain is a motivator for desperate measures,” said Dr. Bobo Tanner, a rheumatologist at Vanderbilt University.
The combination pills, which are widely available in drug and health food stores, typically cost about $40 a month--a lot for someone on Social Security, perhaps, but not an unusual expense for arthritis sufferers. Tanner said his osteoarthritis patients often spent $1,000 a year on unproven remedies. About 10% of them acknowledge taking glucosamine and chondroitin, and at least half have asked about them.
Theodosakis, a sports medicine physician at the University of Arizona who started the craze, estimates that 5 million Americans are taking the supplements. He came across them while trying to relieve his own arthritis, which resulted from sports injuries.
“I needed this stuff, because I was in a wheelchair,” he said. “I wasn’t helped by anything.”
Theodosakis felt a big improvement after two weeks on the supplements. He believes 30% of users will see their arthritis resolve completely, and 80% to 90% will get at least partial relief.
Furthermore, he says, many people find they can reduce their doses over time, and some stop taking the pills entirely without a return of their symptoms.
The most common cause of failure, he says, is brands that contain little or no actual chondroitin and glucosamine. Because the U.S. Food and Drug Administration considers these to be food supplements, not drugs, they escape the kind of scrutiny for purity and effectiveness that medicines receive.
Some arthritis experts are coming around to Theodosakis’ view, in part because they have seen remarkable effects in their patients or even in themselves.
Dr. David Hungerford, head of arthritis surgery at Johns Hopkins University, has been taking glucosamine and chondroitin for two years for a bad knee and fingers.
Hungerford is such a believer that he is one of the rare doctors who offers the supplements as first-line osteoarthritis therapy, ahead of anti-inflammatory drugs.
“It’s made a dramatic difference for me,” he said. “My fingers and joints were swollen and sore. I couldn’t use my index finger. Now I have no symptoms at all.”
Still, many physicians would probably agree with Dr. Ralph Marcus of Hackensack University Medical Center in New Jersey, who has several hundred patients on glucosamine and chondroitin.
“I can tell you that a very small percentage of patients say they feel better,” he said. “My feeling is that somebody’s making a lot of money on a product that is probably ineffective.”
