Ankylosing spondylitis’s relative rarity — at least compared with other rheumatic diseases such as rheumatoid arthritis and lupus — means it hasn’t been widely studied in the context of pregnancy. And it’s often lumped in with other diseases when doctors discuss risks related to pregnancy. But in the past couple of years, new research has shed light on just what the risks associated with pregnancy are when you have AS — both to mothers and their future children, during and after pregnancy. While these studies have been small, they shed some light on what women with AS can expect. Here’s an overview of the risks associated with pregnancy when you have AS, how your treatment plan may or may not change, and what to discuss with your doctor before you become pregnant.

Risks of Pregnancy With Ankylosing Spondylitis

In some forms of arthritis, such as rheumatoid arthritis, disease activity tends to go down during pregnancy. But for AS, that doesn’t appear to be the case. Even before pregnancy, women with AS are already more likely than men to experience certain effects of the disease, according to Elaine Husni, MD, MPH, vice chair of rheumatology and director of the Arthritis & Musculoskeletal Center at the Cleveland Clinic. “Women have more subjective disease activity, so sometimes they have more widespread pain than men do,” Dr. Husni says. “Women also experience more fatigue and peripheral joint involvement, and they tend to score more poorly on functional impairment,” despite having less damage to their spine than men do, on average. Before and during pregnancy, having more disease activity is associated with a variety of harmful effects, says Husni. “Having higher disease activity can reduce fertility and is associated with a higher probability of negative outcomes,” such as preterm labor or low birth weight. According to a study published in May 2019 in the journal Arthritis Care & Research, women with AS are generally at higher risk for several adverse outcomes in pregnancy. This includes a 67 percent higher risk of their baby requiring treatment in a neonatal intensive care unit (NICU). In addition, compared with pregnant women without AS, those with AS who scored high on an index of disease activity were almost six times as likely to require a Caesarian section (C-section) for delivery. And women with AS who took corticosteroids during their second trimester were more than four times as likely to give birth prematurely. There haven’t been many studies that evaluated AS disease activity during pregnancy, but the limited data available suggests that many women experience an increase in active disease. This was one conclusion from a study published in March 2018 in the journal Rheumatology. In that study, women with axial spondyloarthritis (an umbrella term for certain inflammatory spinal conditions, including ankylosing spondylitis) had their disease activity assessed at seven different points before, during, and after pregnancy. The highest levels of disease activity and self-reported pain were during the second trimester of pregnancy, when 45 percent of the women had active disease. Physical function was worst during the third trimester, and self-reported mental health was best six weeks after giving birth — significantly better than during the first trimester of pregnancy.

Treating Ankylosing Spondylitis During Pregnancy

Given the risks associated with certain drug treatments during pregnancy — including preterm delivery, as noted in the May 2019 study — many women with AS go into pregnancy determined to avoid drugs at all cost. But this is often unrealistic and even risky, according to Husni. “The healthier you are when you get pregnant and while you’re pregnant, the better your outcomes are likely to be,” she says. “To stay healthy, you have to stay on your drug, stay in touch with your physician, and make a plan to be as stable as possible.” Husni says there are no hard and fast rules about which medication for AS can or cannot be taken during pregnancy. The important thing, she says, is to make sure your disease is as stable as possible — both for your health and comfort, and for your baby’s. It’s much better, she says, to have stable disease activity while taking your regular medication during pregnancy than to go off it and experience a surge in disease activity — which is likely to require more intensive drug treatments that may pose a greater risk to your baby. “If we do have to use steroids to calm the disease, we’ll try to do it with the lowest dose and duration possible to reduce the risk to your baby,” Husni notes. But regardless of what medication is needed, keeping your disease activity under control has to be the priority, she says. “The more active your disease is, the more you’re at risk for poor outcomes.”

Planning Ahead for Pregnancy With Ankylosing Spondylitis

Having a healthy pregnancy with AS can depend on steps you take before you become pregnant, says Husni. “Spontaneous pregnancy may not be the best choice. If you’re planning a pregnancy, you should mention it” to your rheumatologist. Husni notes that in the general U.S. population, one in two pregnancies is unplanned — so some women with AS won’t be able to plan ahead. But if you can, you should talk with your rheumatologist about whether your disease activity is stable enough to give you the best shot at a healthy pregnancy. “If your disease is very active, we might say, ‘Let’s postpone this for six months and get this under good control, and then try to have a baby,’” says Husni. And, of course, it’s important to use birth control while your disease is not stable. Given the extra strain that AS can put on pregnancy, Husni says it’s also a good idea to see an obstetrician earlier than you might otherwise, to plan ahead, and to see your obstetrician frequently during your pregnancy, if recommended. When you have AS, your regular self-care during pregnancy is even more important, Husni emphasizes. That means getting plenty of sleep, planning out your day ahead of time, eating nutritious meals, and getting some exercise. This is something you can discuss early on with either your rheumatologist or your obstetrician. While planning for and during your pregnancy, Husni advises that you’ll fare best if you communicate frequently with your rheumatologist, your obstetrician, and any other doctors you see. “The key message is that planning and counseling are important,” she says. “Tell your doctor if you’re interested in getting pregnant, and we can work as a team.”