Preconception planning is essential to help women with autoimmune disease have optimal pregnancy outcomes. Unplanned pregnancy can also negatively impact disease course in some patients. Yet many rheumatologic patients of childbearing age do not receive adequate contraception or prepregnancy education and counseling. Rheumatologists must work collaboratively with other healthcare providers to make sure rheumatic patients have access to and receive these critical services.
Most autoimmune and inflammatory diseases seen by rheumatologists are more common in women, many of whom are of childbearing age. Historically, some women with rheumatologic diseases, such as lupus, were discouraged from becoming pregnant due to poor pregnancy outcomes. Lupus, for example, is associated with an increased risk of thrombosis, preeclampsia, infection, thrombocytopenia, Cesarean section, lower birth weight, preterm labor, and fetal and maternal mortality. Many other rheumatic autoimmune diseases, including systemic sclerosis, rheumatoid arthritis, vasculitis, and inflammatory myopathies, have also historically been associated with poorer pregnancy outcomes.1,2
Fortunately, rates of such adverse outcomes have substantially decreased over the past several decades, probably due to changing treatment options and better guidance for lowering pregnancy risk.1 With proper care, most women with rheumatic autoimmune disease can now complete a pregnancy safely, although a small percentage of women may not be able to do so because of severe disease-related damage.
These improvements highlight the importance of proper disease care and family planning. For example, in women with rheumatoid arthritis, lupus and inflammatory myopathies, well-controlled disease at conception and during pregnancy is less likely to result in preterm deliveries and underweight deliveries. By contrast, in studies of women with vasculitis, inflammatory myopathies, systemic sclerosis, lupus and antiphospholipid antibody syndrome, poorly controlled disease has been linked to such problems as intrauterine growth restriction, cesarean section and fetal loss.2
Most commonly, disease that is active at the start of pregnancy will remain so throughout the pregnancy, putting mother and baby at increased risk. Active disease at the start of pregnancy may also increase the risk of a postpartum flare.3
Pregnancy also worsens disease symptoms in some patients, especially in certain diseases such as lupus. Although it was previously thought that symptoms improved during pregnancy in some types of rheumatic disease, such as rheumatoid arthritis, it has become clear that this is not always the case.4
Another important consideration is that many women with rheumatic autoimmune disease take teratogenic medications. For all these reasons, it is critical that women with rheumatic autoimmune disease receive proper family planning services.
It is not only women with rheumatic disease who have unmet contraceptive needs: 45% of pregnancies in the U.S. are unplanned.5 But in many patients with rheumatic disease, the risks and consequences are higher.
Unfortunately, many patients with rheumatic disease at risk of pregnancy do not use any birth control. Those that do often use less effective methods, such as condoms.6 Even patients using teratogenic drugs often do not have adequate birth control, and they may not be any more likely to use contraception than women not on such drugs.7
Why would patients not use adequate contraception? Lack of patient education and dialogue with physicians may play a role. Patients may misperceive their level of fertility or have concerns about the effects of contraception on their disease. They may be reluctant to add medications to an already complicated regimen. Patients may misunderstand or forget information, or they may simply forget to take their birth control regularly. They may be anxious about discussing the topic with their healthcare provider, and they may not know which provider they should ask.3,8 Other patients may choose not to practice medical contraception due to their religious beliefs.
Healthcare providers may not be providing the time and depth to address these topics. In a survey of women with lupus, rheumatoid arthritis and inflammatory bowel disease in the U.S., 30% of patients felt that their healthcare providers had not adequately addressed their family planning concerns.9 Concerningly, one study of women with lupus found that women with the highest disease activity were the least likely to receive family planning counseling.10
Mehret Birru Talabi, MD, PhD, is an assistant professor of rheumatology and clinical immunology at the University of Pittsburgh. She notes, “Some rheumatologists may assume that other providers are managing contraception and family planning for patients, and I think it’s a faulty assumption. I think there are some primary care doctors who are not as familiar with the care of women with rheumatic diseases, and some who probably believe that rheumatologists should manage most aspects of patient care, including family planning care and counseling.”
In contrast, many rheumatologists believe the primary care physician should address these concerns. Rheumatologists may be ambivalent about whether discussing these issues is part of their responsibilities or is an optimal use of time.11
Eliza Chakravarty, MD, is a rheumatologist in Oklahoma City, and an associate member of the Oklahoma Medical Research Foundation. She notes, “Women with these conditions are going to see their rheumatologists more than they see any other doctor. As rheumatologists, we spend so much of our time adjusting their medicines, worrying about their disease activity, looking for toxicities of their medicines, but we may forget about the importance of contraception in women who take these teratogenic medications for years.” She also finds that many community obstetrician/gynecologists are worried they are going to cause harm, so they are sometimes reluctant to provide contraceptive medications that may otherwise be reasonable.
Another expert in this area is Lisa Sammaritano, MD. Dr. Sammaritano is associate professor of clinical medicine in the Division of Rheumatology, Hospital for Special Surgery at Weill Cornell Medicine in New York. Dr. Sammaritano believes that time is the major factor preventing rheumatologists getting involved in preconception and contraceptive planning, but that rheumatologists’ general lack of familiarity with the topic is another barrier.
The Rheumatologist’s Role
Clearly, rheumatologists need to play some role in making sure their patients receive contraception and preconception education. This does not necessarily have to entail prescribing contraceptives, though it may in some cases. Dr. Chakravarty opts not to prescribe contraception in her practice. However, she has an extended conversation about it with new patients, and she brings it up as part of her routine care questions at regular visits.
“One reason I don’t prescribe contraception is because women with autoimmune diseases, particularly lupus, have a higher incidence of HPV,” she explains. “My thinking is that women with autoimmune diseases or who are immunosuppressed cannot clear the virus as easily as healthy people. I make them go to a gynecologist because I want to make sure they have a pap smear and all that reproductive healthcare.” She commonly refers to several gynecologists in the community with whom she has worked with in the past. “Just like I make sure to refer my patients on hydroxychloroquine to an eye doctor for their retinal screening, I make sure they are set up with a gynecologist.”
Dr. Birru Talabi does provide basic contraception to her patients when needed, although there are certain procedures, like IUD insertions, that she refers to an obstetrician/gynecologist. “The point is, we have to be aware that other providers are not necessarily providing contraceptive services. If we are not comfortable managing that contraception piece, then I think it’s important to develop partnerships with women’s health providers in the community, on whom we can rely and have back-and-forth conversations about patients, to ultimately make sure that patients are getting appropriate contraceptive care.”
There is a need for more consistency of care in this area. In a survey of women with lupus, rheumatoid arthritis or inflammatory bowel disease, 40% of U.S. patients reported that they received inconsistent information from different healthcare professionals.9
Dr. Sammaritano recommends, “Until we are all better educated in this area, and/or guidelines are available that will be read by a wide range of specialists, the best way to ensure good care is physician contact. Call or email the OB-GYN with your thoughts and questions.”
Educate & Listen to Patients
In providing better contraceptive coverage, patient education is key. Patients should understand that in most cases pregnancy will be an option for them should they desire it. However, patients must also understand that to have the lowest possible risks for mother and baby, they should work closely with their rheumatologist to plan their pregnancy. Patients must understand that well-controlled disease leads to lower risk. They also need to know that although some medications are not safe to take during pregnancy, others remain essential.
Some physicians may not address the topic, thinking that patients will ask if they have questions.9 Some evidence suggests that patients often desire such counseling, but often rely on their doctors to bring up the subject.12 Some patients may be interested but simply forget to ask, or they may not realize how relevant the topic is to their rheumatologic disease.9
Dr. Birru Talabi recommends patient-centered, nonjudgmental, open-ended questions when discussing family planning. She suggests that the following phrasing may work well: “Tell me a bit about your life and where pregnancy fits in your plans. I ask because I’d like to work with you to try to make sure things turn out the way you’d like them to.”
She notes that many women aren’t clear about their reproductive goals. She advocates empowering women to come up with a pregnancy plan if they do want to become pregnant or formulate a contraceptive plan if they do not.
She also warns not to make assumptions about who needs family planning conversations. “I think we should have these conversations with everybody, all women of reproductive age, no matter what their sexual orientation is, no matter their age, whether or not they are married and whether or not they are on Medicaid, don’t have insurance or don’t have a job.” She notes that even women with severe disease may be having sex and at risk of unintended pregnancy. These women may be the least likely to get contraceptive counseling, though they are the ones who may most be in need of it.3
Birth Control Methods
Dr. Sammaritano emphasizes that patients and physicians must realize that not all contraceptive options are equally effective. She notes, “The choice of contraception should be based on what is most effective and what is safe and acceptable for each individual patient.” She adds, “Long-acting reversible contraceptives—IUDs and subdermal implants—are the most effective, and they should be encouraged when possible.” When picking a method, clinicians and patients should also consider reversibility of the method, any noncontraceptive benefits, side effects, costs and convenience of the method.2
There are relatively few true birth control contraindications for women with rheumatic disease. Because of the increased risk of thrombosis, certain populations should avoid combined contraceptives containing estrogen. These include women with uncontrolled lupus or women with increased risk of thrombosis due to positive antiphospholipid antibody (aPL), due to history of vasculitis, nephritis or thrombosis, or from other factors.6
Progestin-only-based birth control is thought to pose a lower risk of thrombosis than estrogen-containing products, so it can be used in these higher risk patients. Researchers are currently unclear whether progestin-based products carry any additional risk at all. Currently, the American College of Gynecology recommends progestin-only contraceptives as safer alternatives to combined contraceptives containing both estrogen and progestin in women who have lupus and positive aPL antibodies or a history of nephritis or vascular disease.13 When considering such risks, it is worth remembering that pregnancy itself poses a much higher risk of thrombosis than do any hormonal methods of contraception, including combined contraceptives.6
Long-acting reversible birth control methods include IUDs, the most commonly used form of reversible contraception worldwide. The most commonly used IUDs contain copper or a progestin. These devices pose a low risk of pelvic inflammatory infection, which has not been specifically studied in patients on immunosuppressive medications. However, studies from HIV patients showed no increased risk of infection.14
Moderately effective methods include combined hormonal contraceptives containing both estrogen and progestin (via pills, patch or vaginal ring). Although earlier uncontrolled studies showed that combined oral contraceptives might increase the risk of lupus flares, more recent trials have not found an increased risk in patients with stable disease.6
Progestin-only oral pills are also available, as is a progesterone-based injection, which must be administered every three months. Barrier methods of protection, such as the male condom, are less effective and require partner participation. However, the condom offers the advantage of protection against sexually transmitted infection, and it may be used in conjunction with other birth control methods.
Dr. Chakravarty is a strong proponent of IUDs. She points out, “They’re long-acting, so the onus is not on the patient to get the refill, to make their appointment in three months to get a shot. The patient doesn’t have to do anything once it is in. These are people who take a lot of medicines. Even an extra copay of another $5 for another prescription is a pain. If they’re doing nothing and they are passive, they are protected.” She also explains that because the hormones are not significantly absorbed systemically, it is even less of a concern for women who might have a clotting disorder or active lupus.
For rheumatic patients in particular, she also likes that the decision to try to conceive cannot be acted on immediately. Before trying to conceive, patients have to connect with a medical provider to have the IUD removed. She also appreciates that patients can get a pap smear to check for dangerous lesions at the same time. Dr. Chakravarty recommends progestin-based IUDs over the copper-based variety. She prefers them because progestin-based IUDs often result in amenorrhea, which can decrease patients’ risk of anemia from chronic disease.
Ideally, any high-risk medications should be switched over several months prior to conception. Such medications include cyclophosphamide, methotrexate, mycophenolate mofetil & leflunomide.
Doctors should also be aware of possible medication interactions with their patients’ birth control, which can lead to decreased effectiveness of either the contraception or the other medication. For example, mycophenolate and anticonvulsants such as carbamazepine may lower the effectiveness of combined oral contraceptives, whereas oral contraceptive use may increase the drug concentrations of cyclosporine and corticosteroids.6
Other helpful resources on contraceptives include The Centers for Disease Control’s “U.S. Medical Eligibility Criteria for Contraceptive Use,” which provides more detailed contraceptive information for women with specific medical conditions.15
Trying to Conceive
Ideally, patients and doctors should collaborate about the best time to start trying to conceive. It is important that patients understand that this will give them the best chance of a healthy pregnancy.
“If someone is trying to conceive, I do everything I can to try to get their disease as controlled as possible,” explains Dr. Chakravarty. “Then I make sure that they are on medicines that they can continue to take throughout their pregnancy, because even changing a medicine could destabilize the disease and then make the pregnancy higher risk.”
Ideally, any high-risk medications should be switched over several months prior to conception. Such medications include cyclophosphamide, methotrexate, mycophenolate mofetil and leflunomide.1 (Note: For further information on drug safety information during pregnancy, the CDC’s “Treating for Two” is a helpful resource.)
As part of a preconception planning, physicians should also assess possible disease damage that might preclude pregnancy. Clinicians may also need to check for autoantibodies that increase pregnancy risk, such as aPL antibodies and anti-Ro/La antibodies (which increase the risk of neonatal lupus syndrome).16 From there, physicians can synthesize this information and discuss risks, recommendations and prognosis with the patient.
This is part of the reason it is beneficial for clinicians to have ongoing conversations with patients about their pregnancy plans. “If I have somebody that I need to start on a medicine, and they are thinking about getting pregnant in 18 months, then I’m going to go ahead and get them started on a medicine they don’t have to stop and change,” notes Dr. Chakravarty.
Patients desiring pregnancy should also be started on folic acid supplementation, to reduce the risk of birth defects. This is especially important for patients who have been given methotrexate previously. These patients should be given 1 mg daily prior to conception and at least through the first trimester.3
Occasionally, a physician will encounter a patient who desires pregnancy even when it poses a substantial risk to her health. This can be challenging for clinicians, but Dr. Birru Talabi encourages clinicians to try to provide information nonjudgmentally while continuing to support these patients. “Women are not making pregnancy decisions necessarily based on their disease or their medications. There are lots of personal factors that go into these decisions. In order to get on the same page with patients, we have to have an open ear, and we have to be respectful of them. If patients sense that we are judging them, they will not look to us as the resources that we can be.”
Counseling a Patient Unexpectedly Pregnant
Even though it is ideal for women with rheumatic autoimmune diseases to plan their pregnancies, this does not always happen.
Dr. Chakravarty educates her patients to notify her right away if they become pregnant, even before they come in for their next visit. “There are two things: one is making sure they stop taking any teratogenic medications right away. The second thing is making sure that they don’t stop taking safe medicines. That’s just as important. Right away some patients say, ‘All medicines are bad,’ and they stop everything. Then they are at huge risk for a flare. It can make their disease unstable.” Dr. Chakravarty has patients come in as soon as possible to switch them to medications compatible with pregnancy, if necessary, and to provide further information and support.
Dr. Chakravarty notes that most of the time patients on teratogenic medications are not expecting to conceive. When women do unexpectedly become pregnant while taking such medications, Dr. Chakravarty tries to provide them with information. She notes that 85% of babies exposed to methotrexate will be born without significant birth defects. “I want to empower women to make the right choice for them. I give them all the information, all the connections with perinatology so they do other prenatal testing to see the best they can about any potential birth defects. Then they can make the most informed decision for where they are in their lives.”
She also talks to women about their lives to see if having a child is a reasonable option right now. “I also want to make sure that if they have time they can consider not continuing the pregnancy if they don’t want to.”
Improved Counseling Moving Forward
There remain large unmet needs in providing women with rheumatic disease the preconception counseling and planning that they need. Meeting these needs may require a variety of changes.
Dr. Birru Talabi suggests that better education during residency and fellowship may play a role in the future. She points out that literature suggests that some physicians who complete residencies in internal medicine (such as rheumatologists) receive inadequate training in contraception and family planning counseling.
She adds, “I think a systems approach will be important as well. This could include a series of prompts in the electronic medical record that provide an educational printout for patients. Or it could include prompts to help providers figure out what might be safe contraception options for a patient—are all really important things.”
Dr. Sammaritano agrees about the importance of ongoing physician and patient education and also notes the need for more specific clinical research in this area. Recently, Dr. Sammaritano, Dr. Chakravarty and some other clinicians initiated a reproductive health abstract category at the ACR and a yearly reproductive health study group. They are also working with clinicians from many medical backgrounds to produce ACR-sponsored clinical guidelines for reproductive health in rheumatic disease patients. These will be presented at the 2018 ACR/ARHP Annual Meeting. She notes that unfortunately many of the recommendations in these guidelines will be based on extrapolation from other studies, not from studies specifically focused on rheumatic disease patients.
For the moment clinicians will need to synthesize information from a variety of sources to provide the best information for their patients. The May issue of Rheumatic Disease Clinics of North America gives a thorough summary of a variety of issues related to women’s reproductive health, including more detailed information on contraception, preconception counseling and pregnancy.
Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine. She is a freelance medical and science writer living in Bloomington, Ind.
- Kavanaugh A, Cush JJ, Ahmed MS, et al. Proceedings from the American College of Rheumatology Reproductive Health Summit: The management of fertility, pregnancy, and lactation in women with autoimmune and systemic inflammatory diseases. Arthritis Care Res (Hoboken). 2015 Mar;67(3):313–325.
- Birru Talabi M, Clowse MEB, Schwarz EB, et al. Family planning counseling for women with rheumatic diseases. Arthritis Care Res (Hoboken). 2017 Apr 24.
- Østensen M. Contraception and pregnancy counselling in rheumatoid arthritis. Curr Opin Rheumatol. 2014 May;26(3):302–307.
- Østensen M, Brucato A, Carp H, et al. Pregnancy and reproduction in autoimmune rheumatic diseases. Rheumatology (Oxford). 2011 Apr;50(4):657–664.
- Finer LB, Zolna MR. Declines in unintended pregnancy in the United States, 2008–2011. N Engl J Med. 2016 Mar 3;374(9):843–852.
- Sammaritano LR. Contraception in patients with rheumatic disease. Rheum Dis Clin North Am. 2017;43(2):173–188.
- Yazdany J, Trupin L, Kaiser R, et al. Contraceptive counseling and use among women with systemic lupus erythematosus: A gap in health care quality? Arthritis Care Res (Hoboken). 2011 Mar;63(3):358–365.
- Chakravarty EF. What we talk about when we talk about contraception. Arthritis Rheum. 2008 Jun 15;59(6):760–761.
- Chakravarty E, Clowse ME, Pushparajah DS, et al. Family planning and pregnancy issues for women with systemic inflammatory diseases: Patient and physician perspectives. BMJ Open. 2014;4(2):e004081.
- Ferguson S, Trupin L, Yazdany J, et al. Who receives contraception counseling when starting new lupus medications? The potential roles of race, ethnicity, disease activity, and quality of communication. Lupus. 2016 Jan;25(1):12–17.
- Britto MT, Rosenthal SL, Taylor J, Passo MH. Improving rheumatologists’ screening for alcohol use and sexual activity. Arch Pediatr Adolesc Med. 2000 May;154(5):478–483.
- Toomey D, Waldron B. Family planning and inflammatory bowel disease: The patient and the practitioner. Fam Pract. 2013;30(1):64–68.
- ACOG Committee on Practice Bulletins—Gynecology. ACOG Practice Bulletin Number 73: Use of hormonal contraception in women with coexisting medical conditions. Obstet Gynecol. 2006 Jun;107(6):1453–1472.
- Stringer EM, Kaseba C, Levy J, et al. A randomized trial of the intrauterine contraceptive device vs hormonal contraception in women who are infected with the human immunodeficiency virus. Am J Obstet Gynecol. 2007 Aug;197(2):144.e1–8.
- Curtis KM, Tepper NK, Zapata L, et al. U.S. medical eligibility criteria for contraceptive use, 2016. MMWR. 2016 Jul 29; 65(3);1–104.
- Andreoli L, Bertsias GK, Agmon-Levin N, et al. EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome. Ann Rheum Dis. 2017 Mar;76(3):476–485.