From the Archives: Spring 2005 Lupus Now magazine
Complementary & Alternative Treatments For Lupus
by Louise Kertesz
Susan Garbett, 57, was diagnosed with lupus in 1990 and has finally found a treatment plan that works for her. While she sees her rheumatologist regularly near her home in Towson, MD, she says, "I also have a treatment plan with myself."
Garbett does yoga and includes breathing techniques from a program developed by Andrew Weil, M.D., who runs the Associate Fellowship Program in Integrative Medicine at the University of Arizona in Tucson. She also practices biofeedback, meditation, and self-hypnosis. She says that by using these kinds of techniques, she has learned how to become more deeply relaxed. "I can have more control over my medical problem and can reduce my use of medications," she says.
Garbett also believes her diet has helped her better cope with the discomfort her lupus can bring. She follows a low-fat, good-carbohydrate diet that is rich in fruits, vegetables, and omega-3 fatty acids. To that she adds supplements including essential fatty acids. "These have really made a difference in my joint pain," she says.
At age 48, Becky Brown also has found other ways to cope with her lupus. She says that taking vitamins and herbs and visiting her reflexologist gives her a lot of relief. Reflexology works on the tension in the feet to wipe out stress and help heal other parts of the body. Brown also sees a rheumatologist and says she still takes a prescription analgesic occasionally because there aren’t any herbal medicines that are effective enough for her pain.
These two women with lupus are among the millions of people whose first source of medical treatment is conventional Western medicine, but who also use complementary and alternative medicine (CAM) therapies to get relief from symptoms of their illnesses.
Recent studies of lupus patients in Singapore, the United States, Britain, Canada, and Mexico showed that the majority used some form of CAM, according to Sharon Kolasinski, M.D., a rheumatologist and assistant professor of medicine, Division of Rheumatology, University of Pennsylvania.
However, Kolasinski says, "There is no alternative to good rheumatological care and a good dialogue between patients and their doctors. Many people are looking for an alternative to interventions they find harsh, or side effects they hate, or medications they’d rather not take, but we are not at the point where we can offer lupus patients a real alternative to good medical care.
"I think there are alternative medical treatment options that can be integrated into traditional medical practice with lupus patients, but they are very much complementary rather than alternative," she adds.
What Is CAM?
The National Center for Complementary and Alternative Medicine (NCCAM), part of the National Institutes of Health (NIH), defines CAM as "a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine."
Although CAM is often used to refer to all therapies outside conventional medicine, NCCAM specifies that "complementary medicine is used together with conventional medicine," as in the use of aromatherapy to make a person more comfortable after surgery. Alternative medicine "is used in place of conventional medicine," for example, following a special diet to treat cancer instead of undergoing the surgery and radiation recommended by a conventional doctor.
According to NCCAM, integrative medicine "combines mainstream medical therapies and CAM therapies for which there is some high-quality scientific evidence of safety and effectiveness." For example, studies have shown that acupuncture -- a method of healing developed in China -- provides relief of acute pain, according to Donald Marcus, M.D., professor of medicine and immunology, Department of Internal Medicine, Baylor College of Medicine in Houston. But there is no scientific evidence that acupuncture is effective for the treatment of chronic pain, such as in lupus, he says.
For people interested in CAM, "it’s important to find a physician who is open and willing to discuss these therapies" and then to seek out licensed CAM practitioners, says Mary P. Guerrera, M.D., F.A.A.F.P., associate professor, Department of Family Medicine, University of Connecticut School of Medicine. Guerrera describes herself as a practitioner of holistic family medicine, a system that combines conventional and CAM therapies for an integrated approach to patient care. She views disease as the result of physical, social, spiritual, emotional, and environmental imbalance.
According to a 2002 survey conducted by NCCAM and the National Center for Health Statistics (part of the Centers for Disease Control and Prevention) of more than 31,000 U.S. adults aged 18 years and over, 36 percent use some form of CAM. When the definition of CAM includes prayer specifically for health reasons, that number rises to 62 percent.
Overall, the survey revealed that the use of CAM was greater among women, people with higher education, those who had been hospitalized within the past year, and former smokers. When megavitamin therapy and prayer were included in the definition of CAM, the survey found that African American adults were more likely to use CAM than Caucasian or Asian adults.
Furthermore, CAM approaches were most often used to treat back pain or problems, colds, neck pain or problems, joint pain or stiffness, and anxiety or depression, and most of those using CAM did so without consulting a practitioner, the survey found.
Is There Any Evidence of CAM Benefits?
Whether or not meditation, herbs, or supplements should be used to ease some of the pain caused by lupus is still under debate. The role of NCCAM is to inform the public about which CAM therapies are safe and effective, and the agency warns that, for most therapies, no one is certain whether they are safe and if they work for the diseases or medical conditions for which they are being used.
Despite the relief CAM may bring to many people, the lack of scientific evidence for many CAM practices makes CAM "notoriously controversial," wrote Edzard Ernst, M.D., in a 1999 article, "Evidence-Based Complementary Medicine: A Contradiction in Terms?" Ernst is a professor of complementary medicine in the United Kingdom who advocates increased research into CAM, to ground the practice of CAM in science. And because scientific evidence is lacking for most CAM practices, Marcus calls himself a skeptic. He believes the CAM label is used as a marketing tool, and that "there is an incredible amount of unrestrained advertising in the whole field." Marcus also considers the concept of "holistic medicine" superfluous. "A good doctor treats the whole person," he says.
Still, Guerrera feels there’s more to it. "What happens in the fields of biomedical science and research is very important," she agrees, "but philosophically, that is one way of knowing. We have world traditions, such as Chinese medicine, Ayurvedic and Tibetan medicine, that are based on empiric practice over thousands of years" -- that is, based on what works. "Western science and medicine have just begun to study these traditions," she says.
Which is precisely why Guerrera feels that U.S. medical students need to learn about CAM therapies and medical schools need to learn how to best educate these future physicians. The University of Connecticut is one of six medical schools chosen by the American Medical Student Association Foundation to help develop CAM education curricula and programs that can be used at U.S. medical institutions.
A Promising Future for Some CAM Therapies
"Enhancing coping mechanisms for patients is one of the most useful results we can get out of CAM," says Kolasinski. "For people with lupus, some of the mind–body techniques are most promising at this time." An August 2004 article in the journal Arthritis & Rheumatism reports on a trial of biofeedback used by lupus patients to manage stress. The study showed that patients who were given biofeedback-assisted cognitive–behavioral treatment had reduced pain and improved physical and psychological functioning. Some of the benefits lasted at least nine months.
And because studies have shown that meditation helps patients with fibromyalgia, studies could be expanded to include people with lupus, Kolasinski says.
Guerrera notes that many scientific articles have explored the benefit of mind–body techniques, and that breath work, tai chi, and gentle yoga are promising areas of study for use by people with lupus.
A number of herbs and natural supplements also are being studied because they show promise to help lupus, particularly the herbs that may help with inflammation:
- Based on studies showing the positive effects of a Chinese herb known as thundergod vine (Tripterygium wilfordii), the NIH is studying it for use in treating lupus.
- United States Pharmacopeia–approved DHEA (dehydroepiandrosterone), a synthetically altered product from wild yam, was given to 380 patients in a study that was reported in the September 2004 issue of Arthritis & Rheumatism, says Kolasinski. The patients in the study had some improvement and were able to use less prednisone, although some had side effects of acne and facial hair.
- Fish oil supplements (omega 3 fatty acids) have shown promise in rheumatoid arthritis patients and could possibly benefit lupus. However, a relatively high dose is required for little benefit, says Marcus.
Patricia Cofer, a registered nurse in Philadelphia who had to stop working because of complications from lupus, is hopeful of the promise of CAM therapy. She says that while working as a nurse, she attended several health care seminars on CAM.
"The overall objection shared by [doctors] seems to center on the fact that there are not enough data to support the use of 'by mouth' products (supplements), namely the herbs, and the increased possibility of medication interaction," she says.
Cofer has discussed the use of complementary therapies with her own rheumatologist. "My doctor would not approve my use of herbal products but was supportive regarding approaches such as massage, acupuncture, guided imagery, or chiropracty," she says.
Cofer recently has seen an acupuncturist for an evaluation, a therapy recommended by a friend who has Sjögren’s syndrome and fibromyalgia. She also has occasional massages and sees a chiropractor monthly.
"I think the balance lies in gathering the information regarding CAM, and the pros and cons," says Cofer. "If you have lupus, or any other illness, you should always inform your physicians if you plan to add anything to their regimen, to make sure they can do the research for possible interactions."
Cofer further advises those considering CAM therapies to "be aware that CAM is just that, a complement, not a cure." She says the rule of thumb is that it’s probably safer to try external methods that are less likely to cause harm before trying "by-mouth" products. "When I was practicing nursing, these are the things that I stressed."
When "Natural" Might Not Be Good for You
The Dietary Supplement Health and Education Act of 1994 included herbal products in its definition of "food supplements," which are not regulated by the U.S. Food and Drug Administration (FDA). Makers of herbs and herbal medicines don’t have to verify whether their products are safe or effective, and studies have shown that the amount and potency of the active ingredients in herbal capsules vary widely. Certain herbs and herbal medicines have even been found to cause liver damage and death.
An herbal is an extract of a plant that contains hundreds of chemicals in unknown quantities, whose effects on a human being have not been tested, says Donald Marcus, M.D. "I don’t think people should take herbs, period, especially on a chronic, long-term basis," he says.
In a statement, the Lupus Foundation of America said: "If not FDA-approved, the LFA cannot vouch for the safety or effectiveness of a substance. Patients are encouraged to talk to their physicians about products that are not FDA-approved and are reminded to ask the manufacturer/distributor of a particular product what proof there is, other than testimonial, that the product is safe and effective for lupus."
Based on information from Andrew Weil, M.D., Mary Guerrera, M.D., adds that people with lupus should avoid the herbs echinacea and astralagus, which are believed to stimulate the immune system. Alfalfa sprouts also should be avoided, because they contain the amino acid L-canavanine, which can stimulate the immune system in people with lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts.
Learn more about complementary therapies
For more information on herbs and supplements:
- Office of Dietary Supplements, National Institutes of Health, www.ods.od.nih.gov.
- The NIH’s National Library of Medicine, section on Dietary Supplements, Complementary or Alternative Medicines, http://www.nlm.nih.gov/services/dietsup.html and Medline.
- U.S. Food and Drug Administration (FDA) Center for Food Safety and Applied Nutrition, www.cfsan.fda.gov. See "Tips for the Savvy Supplement User: Making Informed Decisions and Evaluating Information" and safety information on supplements.
- Federal Trade Commission’s Diet, Health & Fitness page at http://www.ftc.gov/bcp/menus/consumer/health.shtm or call 877-FTC-HELP.
To learn more about CAM therapies, visit:
- National Center for Complementary and Alternative Medicine (NCCAM), http://nccam.nih.gov/ or call 888-644-6226.
- American Holistic Medical Association, http://www.holisticmedicine.org/.
- American Medical Student Association (for licensing, certification, and standards for practitioners of various CAM therapies), http://www.amsa.org/.
- Natural Standard, http://www.naturalstandard.com/, founded by clinicians and researchers to give evidence-based information on complementary and alternative therapies.
- For physicians, the Journal of Alternative & Complementary Therapies provides the latest information for evaluating alternative therapies and integrating them into clinical practice. For subscription information, visit http://www.liebertpub.com/ or call 800-654-3237.
- EXPLORE: The Journal of Science Healing addresses the scientific principles behind, and applications of, evidence-based healing practices from a wide variety of sources, including conventional, alternative, integrative, and cross-cultural medicine. For subscription information, go to www.elsevier.com.