Young people, especially young women, with lupus should be aware of some of the possible risks and complications of their disease. Here are some health issues to keep on your radar.

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.”

Puberty and fertility

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, MD, MSc, 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, MD, 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 HPV vaccine

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, MD, 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.”

Bone health

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.”

Sexual activity

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.

Your 20s

Contraception

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, MD, MPH, 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. 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.

Pap tests

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.