By the age of 26, Amye Leong had built a good life for herself. She had her master's degree in business administration from Purdue University, a new condominium in the trendy Los Angeles suburb of Marina Del Ray, and a job on the fast track at a major corporation. Her life seemed secure, yet seasoned with the flavor of expectation. The future could bring anything.
And it did. Later that same year, in 1982, the rheumatoid arthritis that had been held in check by medication since Amye was 19 began to flare uncontrollably. Suddenly Amye found herself too weak to get dressed in the morning. She and her doctor began the slow, careful process of trying one arthritis drug after another in the hope of bringing the disease under control.
"I went through months with no relief from the constant pain," she recalls. "I became so depressed, I just about hit rock bottom. In my desperation I would have tried almost anything."
It was at that point that Amye turned to unproven remedies. She tried copper bracelets, special diets, DMSO, Chinese herbal remedies and acupuncture, among other "treatments." Fortunately, though, she didn't abandon her regular medical treatment - or her common sense.
"On at least one occasion, I considered going to a Mexican border clinic," she says. "I was all packed and ready to go when someone said to me, `But don't swim in the pool there - it's dirty.' When I heard that, something clicked in my head and I thought, `This place isn't all it's cracked up to be.'"
Amye didn't stray south of the border, but she did try a treatment from the Far East. A new doctor she was seeing in addition to her rheumatologist put her on a special diet and began giving her acupuncture.
"It's true that acupuncture may temporarily help relieve pain for some people," she says. "But the turnaround I experienced was simply phenomenal. When I got to his office, I could hardly walk, and after three days of treatment, I felt like I wanted to go shopping in San Francisco!"
But as Amye returned for more treatments, reality sank in. The pain relief became more and more shortlived and she started having uncomfortable side effects. Eventually, her rheumatologist determined that the `vitamin' injections she was receiving with the acupuncture were probably strong and potentially dangerous steroid injections. While the drug was masking her pain, it was doing nothing to protect her joints, which were being further damaged by the arthritis.
Actually, Amye was lucky. Her rheumatologist caught the dangerous regimen early enough that it may have damaged her pocketbook more than her health. Many others who have tried unproven remedies have not been as fortunate. In fact, a Food and Drug Administration (FDA) survey shows that one in 10 people who try unproven remedies are harmed by the side effects.
Many, many people are lured into trying unproven remedies at some time or another - in fact, the Arthritis Foundation estimates that Americans spend well over $1 billion a year on questionable arthritis treatments. Cody Wasner, MD, a researcher currently with the Oregon Health Sciences University in Portland, is particularly interested in the question of why so many people with arthritis turn to unproven remedies. In one study he conducted, 94 percent of the people surveyed reported trying a questionable arthritis treatment or health practitioner. He also found that educational level did not seem to influence whether or not people tried unproven remedies.
"Many educated adults who want to stay in control of their own health will fall for the logical, seemingly scientific arguments that health fraud promoters use to support their claims," says Dr. Wasner. "But our findings do show that people armed with specific knowledge about arthritis are less likely to try unproven remedies."
What exactly is
Perhaps the best way to define an unproven remedy is by what it's not. Any treatment that has not been proven both safe and effective in repeated scientific tests is an unproven remedy.
Unproven remedies lack scientific proof of their effectiveness, or that their proposed benefits outweigh their risks. Many unproven remedies are worthless in treating arthritis - or worse, can endager your health.
On the other hand, scientifically tested, proven arthritis treatments work not only to reduce the pain of arthritis but also to reduce the inflammation and possible joint destruction involved with the disease. Scientists think that some treatments may even slow the disease process in some types of arthritis.
In general, unproven arthritis remedies fall into one of three categories: . those that are known to be harmful. These include DMSO, an industrial solvent used topically that's known to cause skin irritation and diarrhea; large doses of vitamins, snake venom, or drugs with hidden ingredients, such as steroids. . those whose effects are as yet unknown. These include potential new drugs or treatments under study - such as fish oil and laser therapy - as well as a host of other non-traditional treatments ranging from bee venom to special diets. While these may later prove to be useful in treating arthritis, they may also prove to have dangerous side effects. . those that do not help arthritis but are probably safe. These include acupuncture, copper bracelets, mineral springs, vibrators and certain other folk remedies.
It's important to point out that "unproven" doesn't necessarily mean useless. For instance, a link between food and arthritis is at present "unproven," but the investigation of the possible effects of diet on arthritis is an experimental area which may provide useful information in the future.
Richard Panush, MD, who is with the University of Florida in Gainesville and is an authority in the field of diet and arthritis, says, "Researchers are examining the possibility that there may be a link between certain foods and certain kinds of arthritis in a very small number of people. For instance, in the future, it's possible we may be able to adjust certain factors in the diet that may affect joint inflammation somewhat. And in careful studies, we have occasionally found a few people who are sensitive to certain foods, which seem to aggravate their symptoms."
He warns that right now there isn't enough information to justify changing your diet to control arthritis. "The majority of fad diets today have little evidence to support their claims," he asserts.
Keep in mind that any unproven remedy - even one considered harmless - can hurt you if it leads you to abandon a treatment program prescribed by your doctor for your individual situation.
Carolyn Keil of Denver learned first-hand that unproven remedies can be deceiving. In 1973, she began what became seven-and-a-half years of treatment with an unproven drug, searching for relief from her rheumatoid arthritis. In the process, she traveled to clinics in Canada, the Dominican Republic and Mexico.
"All I wanted at the time was to be able to carry on with my life - and with raising my children," she says. "I knew the drug hadn't undergone the required tests for FDA approval, but it allowed me to participate more actively with my home and family. Eventually, though, I had to stop taking it because it masked the pain but didn't stop the deformity."
In fact, Carolyn soon needed to have joint replacements in both hands, but her surgeon refused to do the operations because he didn't know the potency of the drug she was taking and what its effects were on her body.
The drug actually contained a strong steroid and both male and female sex hormones. It came with no individually prescribed dosage, except that its color-coded bottles indicated four different "formulas" for people of different sexes or ages.
Today Carolyn attributes the need for her joint replacement surgery and some of her subsequent health problems to the drug she took. "If I had seen a rheumatologist during those seven-and-a-half years, I know I would have been encouraged to change my lifestyle and the activities that were damaging my hands," she says. "Not being able to feel the pain isn't necessarily a good thing!"
People are tempted to try unproven remedies - or to believe that they work - for a variety of reasons. Studies show that unproven remedy use is higher among people who have chronic diseases such as arthritis or cancer. It's understandable that someone who is desperate and in pain, with no end in sight, might want to bypass or supplement standard medical treatments in the hope of stumbling upon something that will make them better. The search is usually a fruitless one.
According to Dr. Wasner, the nature of arthritis itself may encourage people to use unproven remedies. "Because the symptoms of arthritis vary from day to day," he says, "people may associate a natural remission in the disease with an unproven remedy they've tried. In reality, though, the treatment may be worthless."
The difficulties of long-term medication use may also influence people to try unproven remedies. "Consider the case of someone taking 14 aspirin a day," says Dr. Wasner. "Aspirin is a widely used over-the-counter medication that has been proven effective in controlling the pain and inflammation of arthritis in many people. If that person doesn't know much about the nature of arthritis, it might seem just as reasonable - and a lot easier - to try eliminating tomatoes or other foods from the diet. Yet there's no evidence right now that a special diet can help control inflammation like regular doses of aspirin can."
Today Amye Leong and Carolyn Keil have found arthritis medications that work well for them. Both are active Arthritis Foundation volunteers who care about helping others make informed decisions about unproven remedies.
Amye has founded a network of three support groups for young people called Young Et Heart (YET). At least twice a year, the groups have frank, non-judgmental discussions about unproven remedies. Amye has this advice for them. "If you're thinking about trying an unproven remedy," she says, "you need to ask the right questions about it. Don't be afraid to talk to your doctor about why you're considering it and what he knows about its side effects. And whatever you do, don't stop your regular medical treatment."
If you should decide to go ahead and try an unproven remedy, even against your doctor's advice, keep your doctor informed about the treatment. Your doctor can warn you of possible harmful interactions between your regular treatment and the unproven remedy, and can help you look for side effects of the remedy. You should never abandon your prescribed treatment program to try a new "cure," because during the interval, irreversible joint damage may be taking place.
Ken Durham, Deputy Associate Commissioner for the Office of Consumer Affairs at the Food and Drug Administration (FDA), cautions consumers never to abandon their skepticism. "Don't ever assume that because an ad appears in a `reputable' magazine or newspaper that its claims have credence - simply carrying an ad does not mean the publication endorses the product. When reading advertisements, always proceed with caution. Remember, if it sounds too good to be true, it probably is!
"If you encounter a product that you think is fraudulent, complain to several different government agencies, not just one. Contact the FDA, the Federal Trade Commission, the Better Business Bureau, your State Attorney General's Office or your Postal Inspector (if you received advertising through the mail)."
Dr. Wasner adds this thought for consumers: "We might spend months shopping for the right house or car. But when we're faced with the immediacy of our own failing health, we often panic. Your best protection is to educate yourself about arthritis and to investigate any unproven remedy you're considering. That way you're assured of making the right decision."
PHOTO : Amye Leong uses her own experience to help others make informed decisions about unproven remedies.
PHOTO : Carolyn Keil attributes the need for joint replacement surgery and some of her other health problems to the unproven drug she took for seven-and-a-half years.
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|Title Annotation:||includes related information; unproven remedies for rheumatoid arthritis|
|Author:||James, Melissa A.|
|Date:||Jan 1, 1989|
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