Overcome Fear & Misinformation: Solutions for Women with Inflammatory Arthritis Considering Pregnancy

During pregnancy and lactation, some women choose to endure active inflammatory arthritis rather than take disease-modifying drugs. Mehret Birru Talabi, MD, PhD, assistant professor of rheumatology and clinical immunology of the University of Pittsburgh, Pa., and colleagues found some women are concerned about medication safety during pregnancy and while breastfeeding their baby.

In results of their mixed-methods study, published in the July 2021 issue of ACR Open Rheumatology, Birru Talabi et al. report that patients’ health providers gave them conflicting advice about medication safety during pregnancy and lactation—advice which, in some cases, undermined their trust in their providers.¹ The authors emphasize the high rate of peripartum exposure to the fetotoxic drug, methotrexate, underscores the need for better family planning care for women with childbearing potential.

The investigators performed their study in collaboration with ArthritisPower, a patient-powered research network, and CreakyJoints, its online partner community. The organizations helped develop and disseminate a survey among community members with inflammatory arthritis who had at least one pregnancy after their diagnosis with a rheumatic illness. Additionally, the investigators used thematic analysis to evaluate the participants’ (N=66) free text responses. The women in the study were 40 years old on average, and 19 of their pregnancies ended in fetal loss.

Misinformation & Inconsistent Advice

Dr. Birru Talabi

According to Dr. Birru Talabi, for years rheumatologists have observed that rheumatoid arthritis (RA) can improve during pregnancy. However, more recent evidence suggests many women still experience some disease activity during pregnancy. The study revealed that although pregnant women are not experiencing full relief from their symptoms, 80% discontinued even safe medications in preparation for pregnancy or during pregnancy and lactation. The findings were consistent with previous research showing that many patients stop filling prescriptions during pregnancy.² The results also prompt concern that a patient’s fear of the medications harming their fetus may lead to disability or damage from inflammatory arthritis that can extend beyond pregnancy.

The study revealed that although some patients discontinue medications out of fear and a lack of information, other patients discontinue medications because of misinformation. In part, this discontinuation occurs because decisions to continue medications during pregnancy were influenced by their perceptions of safety and advice from healthcare providers other than their rheumatologists.

“Misinformation, in general, has consequences,” says Dr. Birru Talabi, adding, “This discontinuation of safe medications may, unfortunately, cause a lot of physical suffering for patients with inflammatory arthritis.”