You know the importance of following your doctor’s guidelines about medication, exercise, and rest; reducing stress; and eating a healthy diet. But if you’re like many people with lupus, at one time or another you’ve come across a dietary or herbal supplement that really sounds as though it could help you. So, what do you do?
Alternatives for Health: Complementary & alternative therapies may ease symptoms
By Heather Boerner
Sometimes 30-year-old Roseda Molina feels like a guinea pig. The Bronx, NY, resident has lupus, and like many others, her symptoms and treatments are many and varied. And so are the holistic approaches Molina’s tried. There was yoga, massage, and acupuncture, of course. But she’s also tried reflexology, energy healing, Reiki, and soul retrievals. The other day, a Peruvian shaman waved incense and prayed over her feet while massaging them.
“I’ll try anything,” says Molina, a graphic designer and freelance writer who was diagnosed with lupus in 2000. “There’s no way to tell if some of these treatments work, but I try them to deal with side effects [of my medications] and because I’m curious. Can you really wave a hand over someone and heal them?”
Researchers have asked questions like this for years, with varying answers. A quick look at the National Center for Complementary and Alternative Medicine (NCCAM) Web site at the National Institutes of Health shows that complementary and alternative therapies (CAT) have been proven effective for everything from respiratory diseases to chronic hepatitis to osteoarthritis. And the treatments are becoming more popular: Americans spend $33 billion a year on CAT, according to an NCCAM survey. And more than 40 percent of people with lupus have tried or consistently use CAT for symptoms and side effects, says Steven Overman, M.D., associate clinical professor of rheumatology at the University of Washington and founding partner and director of the Seattle Arthritis Clinic.
NCCAM divides CAT into five categories: mind-body treatments, such as yoga and meditation; biologic therapies, such as herbs and supplements; body-based therapies, such as massage, acupuncture, and chiropractic treatment; energy medicine, such as Reiki; and whole medical systems, such as Ayurveda and traditional Chinese medicine. Some researchers also include whole-food diets and folk remedies.
Although NCCAM discusses alternative medicines, all experts consulted for this article, including alternative practitioners themselves, say you should continue taking medications prescribed by your doctor and talk to your doctor before beginning a CAT regimen.
Potent or Placebo?
Scientists are still debating the effectiveness of CAT. A review of all research conducted on CAT to date by the Cochrane Library, a clearinghouse of research publications, found that CAT treatments aren’t as effective as conventional medicine—37.2 percent effective, compared with 41.3 percent for Western medicine. But the harm is also lower: Only 0.8 percent of CAT therapies were found to be harmful, compared with 8.1 percent of conventional treatments.
But don’t ignore that 0.8 percent harm, says Donald M. Marcus, M.D., a professor of medicine and immunology at Baylor College of Medicine in Houston. Chiropractic treatment can tear a blood vessel at the base of the brain, or even cause a stroke in rare instances. Herbal medications are unregulated, meaning you don’t really know what you’re getting.
And those therapies that aren’t harmful may be useful only because they trigger a placebo effect, the phenomenon in which a person’s belief in a treatment creates the desired effect, even when the treatment itself has no specific benefit, says Marcus. But if the person is taking the recommended therapies with no toxic side effects, whether it’s placebo effect or effective treatment may not matter if they feel better, says Overman.
“The thing about the placebo effect is, if you can get 30 to 40 percent better with something that’s considered a placebo, isn’t that worth it?” says Overman.
The key, says Lorena P. Lues, C.H.H.C., C.P.R.P., C.T.R.S., the owner of Utopia Wellness, a health coaching company in Baltimore, MD, is to harness the power of both conventional medicines and alternative therapies to help your body heal.
Lues, who was diagnosed with lupus 18 years ago and also has lupus nephritis, says she helps her clients build a toolbox of skills and techniques that help their bodies heal, which is what she’s also done for herself. Chief among these are things that calm the stress response.
“The goal is lots of stress management with yoga and breathing,” she says. “If you know you’re getting stressed, you need to sit down, reconnect, and do some positive self-talk. The thing we forget is that we’re in control of our bodies. Even with lupus, you have a lot more control than you think.”
That control, she says, comes from mind-body approaches to stress reduction that include exercises, such as yoga poses, and relaxation techniques, such as meditation. Yoga, for instance, has been found to offer some benefit for people with rheumatologic conditions. And in a small, preliminary study, yoga was found to calm stress and inflammation associated with chronic illnesses in as few as 10 days. Since chronic stress can masquerade as depression and stress can trigger flares, this is especially important. Meditation, likewise, has been found to have broad antidepressant and anti-anxiety properties, as well as a positive effect on pain.
The trick to these, says Lues, is to understand that yoga and meditation are really something simple that we all know how to do: stretch and breathe. Lues recommends people with lupus do a gentle form of yoga, such as Iyengar or viniyoga—and that they don’t push themselves. The important thing is to look for a yoga class or video that emphasizes gentleness and to avoid aggressive forms of yoga, such as power yoga, hot yoga, and Bikram.
“The great thing about yoga is that it’s not a competition,” she says. “Sometimes if I don’t feel well, I’ll sit and breathe, do two or three poses, and then I’ll breathe more. That’s my yoga. If it’s very rigorous or uncomfortable, that to me is not yoga.”
Kimberly Dimond, 28, of Midland, MI, found the same. A former runner, Dimond’s doctors recommended swimming, walking, and yoga after her lupus diagnosis six years ago. She started yoga four years ago and found that her muscle cramping eased.
“If I’m not as active as I should be, I have a lot of body pain,” she says. “If I miss a week of yoga, I feel it. Plus, it’s calming, which is also a reason I got into it.”
While yoga and meditation can be done at home with the help of a video or podcast, many body-based therapies, such as chiropractic treatment and massage, require time and money to hire a specialist.
Still, body-based therapies are the CAT most trusted by rheumatologists, according to a survey by a Mayo Clinic researcher. There’s a reason for this: They appear to be effective. Chiropractic treatments, combined with massage and heat therapy, have been found to relieve back pain, according to a review published in the journal Spine in February 2011. A Cochrane review found that acupuncture is effective in relieving some joint pain after eight- and 26-week cycles. In some cases, massage was more effective than acupuncture or physical therapy for back pain.
Marcus says that is because many of these therapies, in his opinion, “aren’t alternative.”
“Massage is a perfectly reasonable approach to recommend because it has sound physical basis,” he says. “But the thing to remember about chiropractic and acupuncture are that they are not inexpensive.”
It is possible to find sliding scale acupuncture at traditional Chinese medicine schools or at community acupuncture clinics designed to treat people in communal rooms and at lower cost. Lues started having acupuncture several years ago after chemotherapy for a particularly bad flare-up of lupus nephritis. It is something she does to “allow the energy in her body to flow.” She uses it for the headaches she still gets that are associated with lupus, as well as for fatigue.
“I go for everything, for whatever I might need,” she says. “I talk to my acupuncturist about whatever’s going on in my life—stress, migraines, fatigue—and she does her thing with her needles.”
Likewise, massage treatments can be good for people with lupus—if they can handle the pressure of massage on skin that can be tender or sensitive. Lisa Ingardia, a certified reflexologist, says she always starts off her foot massages gently and only presses harder if a client feels ready and wants that.
“Everyone responds to reflexology differently,” she says. “You need to keep track of your body, go in for checkups, mention to your doctor that you’re doing reflexology, and check in with yourself after a session to make sure everything is OK.”
The sessions, which usually last about 40 minutes—20 minutes on each foot—can be geared toward either relaxation or addressing organ issues by targeting specific parts of the foot. Since studies have found that the forms of massage that are most helpful in rheumatology are pressure-point massage, it should be no surprise that pressure-point massage of the foot—reflexology—seems to help some people with lupus. There isn’t enough evidence yet to describe how or whether it works, but some, like Molina, swear by it.
“I only worried that the treatment would make my feet more tender,” says Molina, whose most consistent symptom since before her diagnosis in 2000 has been body pain. “I fell completely asleep [at my first session], I got so relaxed.”
Baylor Medical School’s Marcus would say that the “more esoteric” approaches Molina has tried are expensive snake oil. Research is still scarce on the effectiveness of energy work. And Molina is the first to admit she’s felt no physical cures from the soul retrievals, energy healing, and Reiki she’s tried. Reiki, a Japanese stress-reduction technique that involves the laying of hands on parts of the body, has been found in very small studies to reduce use of analgesics, but there’s not enough evidence yet to say whether the reduction is statistically significant.
But proven effectiveness is not the main reason Molina uses these therapies.
What she primarily gets from the energy workers is the time and attention her medical doctors can’t afford to give. She trusts her medical doctors, but sometimes she leaves their offices feeling disconnected by their professional distance. And the prescriptive approach—“my way or the highway,” she says—can leave her feeling invisible.
“I found [energy workers] emotionally reinvigorating at a time when I was almost too run down and heavy with worry to get out of bed,” she says. “A lot of the alternative practitioners I’ve talked to went into the field because they want to connect with their patients. They don’t want to distance themselves. It’s very gratifying. I’ve met a lot of huggers.”
Folk Remedy—Aloe Vera
Like many people with lupus, Atoyia Pencil, 24, wears the effects of her disease on her skin.
“I have leopard skin,” jokes Pencil, who lives in Brooklyn, NY, and recently graduated from nursing school. “I thought I’d be stuck like this for the rest of my life, not being able to wear short sleeves or shorts.”
From neck to toes, Pencil is covered in a rough patchwork of scars, rashes, blemishes, and spots from lupus. Pencil tried everything her dermatologist suggested: triamcinolone, hydrocortisone, hydroquinone, diflorasone.
Then, a few months ago, she tried something that her mother suggested: aloe vera. The spiny succulent has been a folk remedy for wound healing for years, but so far, there’s not enough evidence to say that it works. It does for Pencil, though. After a few weeks of spreading the slimy gel across her skin, she noticed that her skin was softer, her scars and rashes smoother. One day, she says, she may be able to wear three-quarter sleeves, or even short sleeves.
“It’s not a cure,” she says, “but at least I have hope now.”
As you prepare for the holiday season and the cold winter months, be sure to consider what small steps you can take to try to prevent catching a cold or the flu.