Family Planning with Rheumatic Disease

Plan ahead to avoid potentially serious problems from an unintended pregnancy.

By Linda Rath | Jan. 11, 2022

An unintended pregnancy can be as emotionally and financially challenging as it can be joyful. But when you have a rheumatic disease, an unplanned pregnancy can also pose a threat to the health of the woman and the fetus. That’s why the American College of Rheumatology (ACR) recommends that doctors talk to patients of childbearing age about birth control and the risks of unplanned pregnancy at their first visit. There’s plenty of evidence, though, that many people with rheumatic conditions never have these conversations.

In a survey of more than 600 women with a rheumatic disease, such as rheumatoid arthritis (RA) or psoriatic arthritis (PsA), fewer than half reported planning a recent pregnancy or seeing a health care provider before becoming pregnant. Many who did plan their pregnancies didn’t get advice from their providers, and most had to initiate discussions about pregnancy and treatment.

Other studies have found that women with lupus are even less likely to receive birth control information, despite having a greater risk of complicated pregnancies and frequently taking medications that can harm a fetus. Most women in a 2011 study of lupus outcomes, for example, reported receiving no family planning advice, and many used less effective birth control or methods not recommended with lupus.

Medication Concerns

Many women with rheumatic conditions also are never told which medications may be safe before and during pregnancy. In one survey, nearly a quarter of pregnant women stopped taking tumor necrosis factor (TNF) blockers without consulting their doctor, and almost half were told by a health care provider to stop them. Yet TNF blockers, including infliximab (Remicade) etanercept (Enbrel) and adalimumab (Humira), are considered safe during pregnancy and breastfeeding, if needed.

Another study involving 1,300 women with RA found that more than half discontinued various arthritis medications during the first trimester, even generally safe disease-modifying antirheumatic drugs (DMARDs) like hydroxychloroquine and sulfasalazine.  And according to a 2021 German study, many women didn’t restart their meds after giving birth, despite worsening symptoms and even hospitalization.

Rebecca Fischer-Betz, MD, an author of the German study, noted, “We still have to improve the information on pregnancy and family planning with education on the safety of DMARDs before and during pregnancy. I think it is important that both patients and treating physicians have access to correct information.”

Fractured Health Care

Why do so few people with rheumatic diseases get family planning advice? And for those who do get it, why is it often incomplete or just plain wrong?

A 2019 study of women with lupus found that many rheumatologists don’t feel comfortable talking about or prescribing birth control or managing complicated pregnancies. Some also struggle to keep up with new developments in reproductive health and don’t work closely with or refer patients to OB-GYNs. Until the ACR published its comprehensive, evidence-based guideline on reproductive health in 2020, there wasn’t a lot of reliable information about effective birth control and the safety of specific arthritis drugs in pregnancy.

While admitting their own knowledge gaps, some rheumatologists say patients may also be to blame when they don’t trust medical advice and therefore ignore it. Others believe patients have made up their minds that all medications are dangerous during pregnancy and they can’t be swayed.

However it happens, there’s a serious and potentially dangerous communication gap between doctors and patients when it comes to reproductive health. Mehret Birru Talabi, MD, associate director of the Rheumatology Fellowship Training Program at University of Pittsburg Medical Center and an author of the 2020 ACR Reproductive Health Guideline, thinks rheumatologists can do better. In a discussion at the 2021 ACR annual meeting, she noted, “We must be prepared to discuss the safety profiles of various antirheumatic drugs with respect to pregnancy and why medication adherence – if the antirheumatic drug is compatible with pregnancy – can be important not only for the mother’s health, but for the child’s health as well.”

Closing the Gap

If you’re of childbearing age – 18 to 45 – and have a rheumatic condition, it’s essential to have a frank discussion with your doctor about family planning, even if it makes you or the provider uncomfortable. If your doctor can’t or won’t answer your questions fully, honestly and without bias so you can make your health care decisions together (shared decision-making) then it may be time to look for another doctor. Also, be sure your rheumatologist and OB-GYN communicate often for the best overall health care choices for you.