Background/Purpose: Once diagnosed with a rheumatic disease, women often defer or avoid pregnancy or lactation, fearing adverse outcomes for their offspring or for themselves. Scant data exist regarding the attitudes of women with these diseases toward pregnancy and lactation. Furthermore, there is an unclear relationship between breastfeeding and disease activity. Our study evaluates the perceptions of women with rheumatic diseases on pregnancy and lactation while analyzing their outcomes during this period.

Methods: We conducted a single center cohort study of women of childbearing age regarding their attitudes, concerns, and outcomes of pregnancy and lactation. Information was gathered from chart review, telephone interviews and surveys. Those who completed a pregnancy and breastfed were queried further regarding their use of disease modifying anti-rheumatic drugs (DMARD) or biologics while breastfeeding and if their infants had any adverse outcomes.

Results: 154 subjects were included. 51.6% of respondents indicated their diagnosis changed their views on pregnancy. Opinions differed significantly across the diagnoses of JIA (28.6%), AKS (45.5%), RA (43.1%), and SLE (69.4%) (P=0.04). 65.6% of women were concerned about medications affecting the baby. 33.6% indicated that their views on breastfeeding changed as a result of their disease diagnosis. Views on breastfeeding did not differ significantly between diagnoses. 29.7% of respondents said their diagnosis changed their minds about having children, a sentiment that differed significantly by diagnosis (AKS: 11.1%, JIA: 0.0%, Other: 30.0%, PSA: 33.3%, RA: 20.4%, SLE: 53.1%; P=0.01). The rates of breastfeeding did not differ significantly for babies born before or after the mothers’ diagnosis (before: 86.6%, after: 82.2%; P=0.50). Breastfeeding duration did not differ by diagnosis status (P=0.21). After diagnosis, more women stopped breastfeeding early to start a medication they believed to be contraindicated (before diagnosis: 2, 3.5%; after diagnosis: 12, 20%; P=0.005). Of the 46 who responded, breastfeeding positively, negatively, or did not affect the mother’s disease state in 21.7%, 43.5%, and 34.8%, respectively. There were 35.3% (12/34) instances of having to change medical therapy due to disease worsening while breastfeeding. 18 women breastfed 21 babies on a DMARD or biologic. None of these women reported a delay in their children’s developmental milestones.

Conclusion: After disease diagnosis, nearly half of women negatively changed their views on pregnancy, and a third of women negatively changed their views on lactation. Women were concerned that the use of a DMARD or biologic may affect their own health or their baby’s health. There was no difference in the rates or duration of breastfeeding between women before and after diagnosis, however after diagnosis, some respondents refrained from or curtailed breastfeeding due to concerns for medications or lack of information. Disease activity during lactation is variable based on our data; further studies are needed to fully evaluate this issue. This study highlights an unmet need in patients of childbearing potential for data and education regarding pregnancy and lactation.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/perceptions-and-outcomes-of-pregnancy-and-lactation-in-patients-with-rheumatic-diseases/