Background/Purpose:

With new data demonstrating medication compatibility in pregnancy and lactation, it is important to understand how this information can best reach patients. We sought to identify the decision-making process and gaps in knowledge for women of childbearing age regarding their use of rheumatic medication.

Methods:

A cross-sectional study conducted in collaboration with an online arthritis community from March to June 2017. After an e-mail invitation members provided consent by clicking their unique link to the online survey. Participants were women aged 18-50 years with inflammatory arthritis.

Results:

The majority of 250 women who took the survey were white (83%), not Hispanic (82%), college graduates (69%) and had rheumatoid arthritis (80%); average current age was 39.5yrs and age at diagnosis was 26yrs. Sixty eight (27%) women had pregnancies following their arthritis diagnosis and each reported about her most recent pregnancy. Of these, 31% stopped methotrexate (MTX) and 22% stopped TNF-inhibitor (TNFi) prior to pregnancy; 53% took prednisone, DMARDs or biologics during pregnancy. Fifteen percent had inadvertent MTX exposure during their most recent pregnancy. Prednisone was the most common medication in pregnancy and lactation, followed by NSAIDs and TNFi. Most women reported taking medications by physician instruction, but a minority stopped despite physician reassurances.

Of the 37 women who breastfed their last infant (76% of live born infants), 20 (54%) reported taking at least one anti-rheumatic medication (prednisone, DMARD, or biologic) beyond NSAIDs. Prednisone was by far the most common medication used in lactation (17) with only 5 women using a TNFi. Many avoided arthritis medications while breastfeeding: 86% reported either stopping breastfeeding to take medications or avoiding medications to breastfeed. This caused significant distress for some women: “…I decided it would be better for my baby to be able to hold her, than to be breastfed” and “For the first 6 months I flared while breast feeding and… I would have my spouse hold the baby up to my breasts (to) breast feed. I was in bed for 6 months.”

Most women (69%) were very worried about the impact of their medications on a pregnancy. A majority of women talked to their doctor, most commonly a rheumatologist (89%) or obstetrician (OB) (78%), about the risks of medications on pregnancy, with fewer talking to a high-risk OB (39%). Women had the highest level of confidence in the high-risk OB (76% very confident) followed by their rheumatologist (58%) and OB (38%). Among women consulting more than one provider, most (75%) reported receiving a consistent message from their clinicians about medications in pregnancy and lactation. Many women (61%) also searched online for more information.

Conclusion:

As many as half of women reported discontinuing arthritis medications during pregnancy and/or lactation, sometimes suffering with arthritis activity to avoid any perceived risk to the fetus or newborn. Clinical data suggests that many rheumatic medications may be compatible with pregnancy and lactation, but more education is necessary to support women’s decision making about arthritis treatment.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/tough-choices-understanding-the-medication-decision-making-process-for-women-with-inflammatory-arthritis-during-pregnancy-and-lactation/