Planning ahead for contraception and pregnancy
After an unexpected pregnancy ended in miscarriage in 2010, Stephanie Jones, now 30, opted to use an IUD (intrauterine device) for birth control. It was not a good time to get pregnant: Her lupus was not in remission, and she was taking methotrexate—an immunosuppressive drug known to be teratogenic (capable of causing birth defects).
I think it’s fair to say that I was not planning to become pregnant,” she says. Her body had other plans. Fourteen months later, in spite of the IUD, Jones conceived again.
Jones, who was diagnosed with lupus in 2005 after enduring symptoms since she was a child, says she doesn’t recall ever discussing reproductive health issues with her doctors, prior to her miscarriage. “I was not sexually active at the time of my diagnosis; managing my symptoms and medications seemed to be the main priority. I did not have a gynecologist at the time, and safe family planning was not something that was discussed until after the miscarriage in 2010.”
Family planning for women with lupus
Eliza F. Chakravarty, M.D., a rheumatologist and researcher at Oklahoma Medical Research Foundation in Oklahoma City, who practices what she calls “reproductive rheumatology,” says there’s not enough emphasis on the subject of family planning and pregnancy in the offices of rheumatologists and other specialists who treat chronic illness.
Chakravarty and colleagues Megan Clowse, M.D., M.P.H., from Duke University in Durham, North Carolina, and Caroline P. Gordon, M.D., F.R.C.P., from the University of Birmingham, United Kingdom, decided the time had come to get some answers after they attended a symposium on reproductive issues, women’s health care, and rheumatology, sponsored by UCB Pharma, of Brussels, Belgium, in 2012.
Intrigued by data gathered at UCB, they designed a set of surveys “to identify family planning and pregnancy (FPP) issues for female patients of childbearing age living with a chronic inflammatory disease and to assess whether current clinical practice routinely provides adequate support to alleviate these concerns,” according to their study, published in BMJ Open in February. The surveys were given to 350 specialist physicians (rheumatologists and gastroenterologists) and 969 women (participants had lupus, rheumatoid arthritis, Crohn’s disease, ankylosing spondylitis, or inflammatory bowel disease).
Reproductive health deserves more attention from rheumatologist
Results from the survey (presented at the 2013 ACR meeting and published online at BMJ Open) revealed some reluctance to talk about reproductive health and family planning issues from both the physicians and women; furthermore, fewer than half of the rheumatologists and gastroenterologists reported consulting their patient’s treating general practitioner/gynecologist about FPP topics.
“What may explain these results is what some rheumatologists tell us: They feel that this topic is not their specialty—that even asking about contraception is more in the domain of the woman’s general practitioner or obstetrician/gynecologist,” says Lode Dewulf, M.D., chief patient affairs officer at UCB.
Chakravarty believes it’s an essential part of the job. “As rheumatologists, we see our patients more than anybody else. It’s important for us to bring up reproductive issues with them.”
Meanwhile, the majority of women said their FPP-related concerns are not adequately addressed or settled during their medical appointments, and only 30 percent to 40 percent considered the advice and information they received to be consistent across multiple health care professionals. “Of course, it is also up to the woman to speak up,” Dewulf says. “We are all patients, and patient empowerment means that we all have to stand up for our own interests.”
Medication safety when you're trying to conceive
The women surveyed also reported receiving conflicting information about which medications should or should not be taken when a woman is trying to conceive, is pregnant, or is breastfeeding. Chakravarty stresses that both methotrexate and CellCept®—two medicines commonly used for lupus—are known to cause birth defects. But there are many more questions than answers.
“When the U.S. Centers for Disease Control and Prevention (CDC) looked at websites on pregnancy information, they found that a lot of sites were giving contradictory information,” says Dewulf. “Very few people seem to have a true and complete overview of what is known in this delicate and complex field. I think we need to better tap into the unique expertise of specialized centers like Motherisk in Toronto, or OTIS, or the FDA, to really find a more solid base of information.”
Try to find an integrated pregnancy care center
Every woman with a chronic disease such as lupus who is planning a pregnancy, or is already pregnant, should always have a fetal/maternal medicine specialist and an obstetrician familiar with lupus, as well as her regular rheumatologist, on her medical team. That can be complicated when appointments cannot be scheduled the same day at the same location. Dewulf mentions that a few medical centers do have “integrated pregnancy care,” where the different clinical specialties work together under one roof and provide the coordinated appointments and care that the pregnant woman needs.
The medical center where Stephanie Jones was cared for during her pregnancy is an example of such successful integrated medical care: Not only does Chakravarty, her rheumatologist, work there, but so do the rest of the members of her medical team. Jones says that during her pregnancy she served as coordinator. “I did a lot of the communicating between the three physicians.”
Jones had one more thing going for her: she works at the University of Oklahoma Medical Center, where all of her doctors work. “They knew the great toll that work would take on my body,” she says. “In the 26th week I went on light duty; at 34 weeks I went on bed rest. I don’t plan to do it again. But I’ve learned to ‘never say never!’ ”
It was the happiest of endings: Foxworth (Fox) Jones was born without incident, and turned 2 years old in March.
Advice on discussing reproductive health with your doctor
Needing answers and broaching the subject with your doctor are two different things. It isn’t easy to bring up sex and contraception—especially if you’re a woman seeing a male physician. Eliza Chakravarty, M.D., offers this advice on how women can feel more confident and comfortable talking about some of these more personal issues:
Pregnancy planning. “If you’re considering becoming pregnant in even the next three to five years, start with your rheumatologist, even if you have a gynecologist. Say, ‘Hey, listen, I want to start a family in the next couple years. Do you have any advice?’ Or, ‘What do you think about that?’ ”
Contraceptive choices. “If you’re not planning on becoming pregnant, you can bring it up with your rheumatologist and say, ‘I’m going to the gynecologist to get some contraception. Are there any contraceptives or birth controls that I should avoid because of my lupus?’ That way, you bring it up in a very medical sense, but it opens the door.”
For further information, consult the guide for birth control for women with lupus, available at lupuspregnancy.org from HOP-STEP.
Intimacy issues. “Sometimes, it has to come from the patient. Physicians often say, ‘Is your lupus affecting your school? Is it affecting your job?’ It’s a little awkward for a physician to say, ‘How is your sex life?’ Start by seeing how open your doctor is to a discussion on a more personal level. Start with, ‘What can I do about fatigue? I’m really tired; I’m having trouble giving my kids a bath at night,’ or something like that.”
Birth Control Options
Eliza Chakravarty, M.D., says women with lupus have several options when it comes to choosing birth control today: “Birth control pills come in different dosages of estrogen and progestins; progestin-only implants can be inserted under the skin in the arm; and there are Depo-Provera injections.” But by far, Chakravarty’s personal favorite contraceptive for women with any autoimmune disease, but particularly with lupus, is the intrauterine device, or IUD. “These are a totally new generation from the ones of the ’70s,” she says. Among the reasons for her enthusiasm:
- An IUD lasts for five years.
- After three months of spotting, women tend to not have periods, because it reduces the endometrial lining. If you’re already anemic from lupus, or have low platelets, no periods means that mode of blood loss is eliminated.
- It’s not an extra pill, so it’s one less medicine to take, one less prescription to fill.
- If you forget about it, you’re protected from pregnancy.
- The gynecologist who checks your IUD regularly will also be doing a Pap smear to check for cervical cancer at the same time. That’s important, because some studies that suggest that women with lupus have an increased risk of cervical cancer.
- IUDs are very safe and don’t increase infection risk.
- You don’t have to have had a baby before getting an IUD; when you’re ready to have a baby, you have the IUD taken out.