From the Archives: Summer 2008 issue of Lupus Now
Gaining Perspective: Small, consistent efforts can help you manage the weighty side effects of prednisone.
by Martha J. Frase
Prednisone is the drug you love to hate. The side effects of this powerful corticosteroid are dreaded -- rapid weight gain, hunger, hair loss, fluid retention, and the characteristic swollen "moon face." But for people with lupus, it is, for now, their best defense against serious organ damage.
"When you’re flaring and feel crummy, or an organ is threatened, you want a quick response," says Rosalind Ramsey-Goldman, M.D., a rheumatologist and professor of medicine at Northwestern University’s Feinberg School of Medicine in Chicago. "It’s like killing an ant with a sledgehammer, but until we get better targeted therapies, we are limited by what we have available."
Still, many people with lupus are troubled by fears of weight gain. "This is always a major topic of conversation in my support group," says Mary Beth Goehl, 48, of Crystal City, MO, who has battled her lupus for almost 30 years. Although she knows of women who resist taking steroids, she is not one of them: "I eventually came to the realization that I have earned this weight through the hardships I have gone through. This is my life. This is how I am. I wish I could get every woman to feel that way."
"Patients simply do not like the way their bodies look," says Ramsey-Goldman, but she assures people that as the dose is reduced, the weight does come off.
"Some doctors will tell you that you need to be on prednisone, but won’t address the weight gain, hair loss, and moon face, and how that affects someone," says Carla Ulbrich, a 40-year-old musician and songwriter in Somerset, NJ, whose lupus affects all of her major organs. "That can be frustrating." Still, having undergone three major flares that were controlled with high doses of prednisone, she says she knows the treatment is effective. "My approach is to take the medicine, get it over with, and get off it as soon as you can. The longer you wait to start taking it, the sicker you’ll get."
Ramsey-Goldman agrees wholeheartedly. "Doctors know that if the organ is damaged, we can’t get it back. So the goal is to get the flare-up under control, then taper off the steroid dose. Everyone believes in less prednisone."
Since Goehl may need to be on a maintenance dose of prednisone for the rest of her life, she focuses on small efforts to fight weight gain every day. "You have to feed your body to keep the metabolism going," she says, "so I eat small, low-calorie snacks, so I always have something in my stomach."
Ulbrich swears by her gluten-free diet. Although she knows it is not the best option for everyone, and should be used under a doctor’s care, she finds it staves off bloating for her. "I can now buy all kinds of gluten-free products -- even cookies and bread. This wasn’t the case a few years ago. I also avoid bingeing on salt and sugar. I’ve quit drinking soda, and I eat a 'whole foods' diet with lots of fruits, veggies, beans, and oatmeal."
Getting enough exercise is also a good way to help maintain your ideal weight. Rheumatologists recommend general conditioning activities for people with lupus -- like walking, swimming, low-impact aerobics, and bicycling. Small, consistent efforts can make the difference, says Ramsey-Goldman. "Even if you only walk for 10 minutes a couple of times a day, you are burning calories, strengthening muscles, and counterbalancing the bone-losing effects of steroids." Of course, any exercise program should be supervised by your physician.
Ulbrich puts it this way: "You have to start where you are." After suffering a stroke, she was barely walking with a cane at first. "I started regaining my strength in the pool. When I did start walking, I set small goals: walk three minutes today, then four minutes tomorrow." Now recovered from the effects of the stroke, she has to be careful about pushing her fitness routine too hard: "In fact, vigorous exercise was part of the stress that led to my last flare, so I am trying to be sensible, which is not easy when you want to lose weight. I am carefully working my way up to 30 minutes of activity at a pace that makes me break a sweat and improves my cardio system. I do lots of repetitions of lifting very light weights, to get the benefits without major stress on my system. And I always stretch!"
Alongside diet and exercise, emotional support is key to countering the effects of prednisone. "Depression and anxiety can be big problems for people who take steroids," cautions Ramsey-Goldman. "Behavioral therapy and group support are important. You need to maintain a feeling of empowerment, so you don’t feel you are being taken over by a disease or a drug -- it’s very hard to do this alone."
Goehl has found that her hobbies keep her active and engaged. "I love gardening and bird watching, and even during a flare I can still get motivated to walk out to my bird feeder and fill it. Find something you enjoy that helps you pull those inner reserves up when you need them," she says. And try to keep your attitude about prednisone realistic, she advises. "If I didn’t have this drug, I wouldn’t be alive, so to women who resist it, I say, 'never say never.' Just remember that the weight will come down when the dose comes down. It’s only temporary."
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