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.
A Numbers Game: How Lupus Affects a Woman’s Health Through the Years
By Lisa Tillman
When most women hear the term “reproductive health” they think about pregnancy, but there’s more to the female life cycle than having children. Puberty, birth control, bone health, and menopause are just some of the things women living with lupus need to be concerned with, and whether you’re 15, 25, or 60, there’s plenty for you to know.
Childhood and the Teen Years
Little girls often think about growing up and having babies, but for Aiden Gallagher, 17, of Salt Point, NY, it’s been different. When Aiden was 11, she was diagnosed with lupus. Six months later she began a year of intensive chemotherapy, followed by four years of maintenance chemotherapy (four infusions per year). From the beginning, doctors warned Aiden and her parents that the treatment might affect her reproductive health. “Our initial concern was, of course, getting her healthy,” says Elizabeth Gallagher, Aiden’s mother. “She was only 11, and the thought of her having her own child was far off in the future.”
The physical stress of a chronic illness like lupus can sometimes stall the onset of puberty. “On average, the delay is about a year, and the lag time correlates with the severity and duration of the disease,” says Hermine Brunner, M.D., M.Sc., associate professor of pediatrics in the Division of Rheumatology at Cincinnati Children’s Hospital Medical Center.
Children with lupus and their parents also need to know that lupus and some of the treatments for it can have long-term ramifications for reproductive health. Fortunately, pre-pubescent girls who undergo cyclophosphamide (Cytoxan®) therapy, or chemotherapy, seem to be relatively protected from the treatment’s harmful effects on the ovaries. In fact, the younger you are and less time you are on Cytoxan, the lower your chances of infertility, says Jill Buyon, M.D., professor of medicine and vice chair of the Department of Rheumatology at the New York University School of Medicine.
An alternative chemotherapy treatment is a gonadotropin-releasing hormone (GnRH) agonist called Lupron®, an artificial hormone that may help protect the ovaries from the toxic effects of chemotherapy by putting the ovaries to sleep. In addition, mycophenolate mofetil (CellCept®), a drug that has recently been shown to work as well, if not better, than Cytoxan for lupus nephritis, does not cause ovarian failure, according to Buyon.
The Centers for Disease Control and Prevention recommends that all girls ages 11 or 12 get the human papillomavirus (HPV) vaccine to protect against cervical cancer and precancer. Girls with lupus are no exception, says Megan E.B. Clowse, M.D., director of the Autoimmunity and Pregnancy Registry at Duke University in Durham, NC. “A lot of women will be exposed to HPV but can get rid of it on their own. Females with lupus, and others who are immunosuppressed, have a harder time getting rid of HPV, so that puts them at a higher chance of having abnormal Pap smears, and eventually, developing cervical cancer.”
The vaccine is considered safe in immunosuppressed people, Brunner says. “Whenever possible, the HPV vaccine should be given at a time when steroids are being taken in low doses, to ensure that the body’s immune response to the vaccine is adequate.”
Most 17-year-olds aren’t overly concerned with their bone health, but Aiden knows she has to be. “I’ve had lots of problems with my bones already; something’s always breaking,” she says.
Humans acquire most of their bone mass before the age of 20, but due to the inflammation associated with lupus, and corticosteroid use, children with lupus often don’t develop the bone density they should. Brunner advises starting children on calcium and vitamin D once they begin steroid therapy and encouraging regular physical activity. “Exercise is good for people with lupus; it’s associated with better disease outcome. Exercise also helps with mood and probably helps with fatigue.”
Aiden agrees. She hits the gym regularly, hikes, walks, skis, and swims. “I’ve always been very active, and it was important to me not to turn into a couch potato.”
As teens with lupus get older, Clowse says there are other concerns. “I’ve been having a lot of teenagers show up in my clinic pregnant, so contraception is really key. Young women shouldn’t think just because they have lupus they can’t get pregnant, and parents shouldn’t think that just because their girl is sick that she’s not having sex, because she may be.”
“We can talk to our teen patients about things they don’t want to share with their mom and dad,” Brunner says. “If they’re going off to college and they haven’t started contraception, then we need to have a very serious talk.” Brunner explains to teens with lupus that if they get pregnant, some of their medications may be harmful to a fetus and that hormonal fluctuations during pregnancy can cause lupus flares.
As young women with lupus move from their teens to early adulthood, contraception continues to be a big issue.
One of the most popular methods of contraception for American women is the birth control pill. The pill works by using hormones to prevent ovulation. The most common type contains two hormones, estrogen and progestin, but there are pills that contain just progestin.
For Cory McLaughlin, 33, who was diagnosed with lupus at age 25, contraception was always a problem. “I couldn’t tell you the amount of birth control pills I tried. I had the normal one, then I tried the one that’s only one hormone, and then I had ones that are lower dosage. Then I tried the NuvaRing®,” says McLaughlin, of Long Island, NY. “Then I tried an IUD [intrauterine device], and that caused the least amount of problems with my lupus.”
The IUD is a long-lasting birth control method. There are two types of IUDs: the copper-containing ParaGard®, which can be left in place for up to 10 years, and the Mirena® IUD, which contains progestin and can be left in place for up to five years. Both types of IUDs must be inserted by a doctor.
“It’s important for women to speak with their physicians about which birth control method is right for them,” Buyon says. Buyon and Michelle Petri, M.D., M.P.H., headed the landmark SELENA study published in The New England Journal of Medicine in 2005 that examined the safety of estrogen-containing birth control pills in women with lupus (see “Resources” at the end of this article). The study did not find an increased risk in severe or mild/moderate flares in women with stable lupus who were given estrogen-containing birth control pills.
However, Buyon warns that women who have antiphospholipid antibodies, which are associated with the risk of blood clots, need to be careful. “These antibodies put them at greater risk for clotting, and, therefore, an estrogen-containing contraceptive may be contraindicated.” For women with these antibodies, progestin-only birth control methods, such as the mini-pill, the Depo-Provera® shot, or Implanon® are alternatives. Implanon, a matchstick-sized, hormone-based contraceptive, is inserted by a clinician under the skin of the upper arm and is effective for three years.
Barrier forms of contraception such as diaphragms and condoms are also options for women living with lupus. Women with multiple sex partners should always use condoms.
Clowse says women living with lupus—and others who are immunosuppressed—need to be vigilant about seeing their ob-gyn or primary care doctor for an annual Pap test. “There is a higher rate of abnormal Pap smears in women with lupus, potentially a precursor to cervical cancer,” she explains. You should also check with your doctor if you’re suffering from frequent yeast infections. Women with lupus who are taking steroids are more prone to these easily treatable fungal infections.
Many women face fertility concerns in their 30s, and women with lupus are no different.
When McLaughlin found out she had lupus she worried it would affect her ability to have a child. “I’d read a lot of stuff on the Internet about getting pregnant with lupus and miscarriages and infertility, and so when I got the diagnosis I was scared that I would never have children.”
Fertility is generally normal in a woman with lupus, but pregnancy should be carefully planned, Buyon says. “You have to discuss this with your doctor, and you may have to adjust your medications. You shouldn’t be getting pregnant in the middle of a flare.”
McLaughlin consulted with a high-risk ob-gyn, a maternal-fetal medicine specialist, and her rheumatologist before getting pregnant. “All three of them worked together,” she says. “I was very fortunate.” McLaughlin, who blogs about lupus at mommypleasedontbesick.blogspot.com, is now mom to a 4-year-old son and a 5-year-old daughter.
When Debbie Frerick, 40, of Middletown, OH, received Cytoxan for her lupus nephritis, her doctor warned her that the treatment might leave her unable to have -children. Frerick went through menopause at 31, compared with the average age of 52. “If you would have asked me how I felt about early menopause when it happened, I would have said that I felt very sorry for myself and questioned why this happened to me,” Frerick says. “Now, I think of it as a small price to pay to be alive. I look for the positives in life and trust that this happened to help me through.”
Premature ovarian failure, the loss of normal ovarian function before age 40, is more common in women with lupus, according to Clowse. “Cytoxan can definitely promote premature ovarian failure,” she says. In general, women with lupus are more likely to go through early menopause. “The medications will do it, but it seems that women with lupus may go through menopause five to 10 years earlier than usual,” Clowse says.
Women with premature ovarian failure have fertility options, such as in vitro fertilization (IVF) using donor eggs or donor embryos. Both procedures use eggs from a woman with normal ovarian function and involve supplemental hormones. Women with lupus and ovarian failure considering a pregnancy should consult with their doctor as well as a reproductive endocrinologist or fertility specialist before deciding upon treatment.
As women living with lupus enter their 40s, they need to make sure they are doing all they can to take care of their bones.
Osteoporosis is a major health concern for many women, but for women living with lupus who have been on high doses of steroids, like Frerick, the risk of bone loss and fractures is even higher. Clowse says treating osteoporosis in women of reproductive age poses some difficulties. “Most doctors try to avoid using biphosphonates [Fosamax®, Actonel®] until a woman is done having children because those medicines stay around in a woman’s body for years.”
Frerick, a second-grade teacher, says the best therapy she’s found for her lupus symptoms is also great for bone health: exercise. “I first started walking, and then I ran. I belong to a group called Lupus Runners, and we raise money for the Lupus Foundation of America.” (Learn how to create your own fundraiser in the “Resources” section at the end of this article.) Frerick also takes calcium supplements to help her bone health and has regular bone density scans. Clowse says moderate exercise is good for people with lupus: “Things that are easy on joints like walking, swimming, yoga.”
The 50s and Beyond
Bone health and menopause are the big issues for women with lupus as they enter their 50s. “You take steroids, and you’re at bone loss risk; that’s just the way it is,” Buyon says. “Menopause further compounds the difficulties regarding bone health.”
No two women experience menopause the same way. Songwriter and music industry consultant Linda Lou McCall, 60, of Phoenix, was diagnosed with lupus at age 32. She went through menopause at 53. “It didn’t last long, and it wasn’t as bad as I anticipated, although I did find myself trying to get in my freezer one day during a particularly brutal hot flash,” says McCall.
Menopause seemed a relief to McCall after years of painful periods, ovarian and Bartholin’s cysts, a stillbirth and several miscarriages, and uterine inertia during labor. “Compared to the rest of my reproductive life, for me, menopause was a breeze,” she says.
Women who suffer from debilitating hot flashes are sometimes put on hormone replacement therapy (HRT), but according to Buyon, this treatment may not be right for women living with lupus. The 2005 SELENA study that she headed found that, although HRT did not cause an increase in severe lupus flares, it did cause a slight increase in mild/moderate flares.
Because of the risk of increased lupus activity, along with the risks of breast cancer and cardiovascular disease associated with HRT, treatment with HRT should be as brief as possible, says Lisa Sammaritano, M.D., associate professor of clinical medicine at Weill Cornell Medical College/Hospital for Special Surgery in New York City. Sammaritano warns that women with active lupus and antiphospholipid antibodies should never be treated with HRT, due to the increased risk of blood clots, as noted in the “Contraception” section above.
The good news for women in their 50s is that menopause may lead to a decrease in some lupus activity, although some studies have disputed this. “As women with lupus move through their 40s and 50s and beyond they need to be sure to get regular mammograms and Pap tests, especially if they have had long-term treatment with immunosuppressive agents,” according to Sammaritano.
“A lot of the things we say—such as get adequate calcium in your diet and exercise regularly—are important for everybody,” Sammaritano says. “But it’s even more important for women with lupus to pay attention and make sure they stay on top of those things.”
American Society for Reproductive Medicine: reproductivefacts.org
American Urological Association Foundation: urologyhealth.org
The SELENA study: Combined oral contraceptives in women with systemic lupus erythematosus. The New England Journal of Medicine 2005; 353:2550–2558. content.nejm.org/cgi/content/full/353/24/2550.
In addition to medications and other medical care from doctors, a large and growing number of people turn to other healing practices to try to improve their health.