FOR IMMEDIATE RELEASE
ArthritisPower Data Published in ACR Open Rheumatology
UPPER NYACK, NY (June 11, 2021) – Today CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation (GHLF), announced a new peer-reviewed article showing that women will often choose to endure active, inflammatory arthritis symptoms, rather than using disease-modifying anti-rheumatic drugs (DMARDs) because of their concerns about medication safety during pregnancy and breast feeding, despite many drugs for arthritis being approved as safe for pregnant and lactating mothers. Published in ACR Open Rheumatology, the article, “Tough choices: Exploring medication decision-making during pregnancy and lactation among women with inflammatory arthritis,” also highlights that childbearing women receive conflicting medical advice from their health providers when asked to make decisions about their arthritis treatment.
“We know that some women who discontinue inflammatory arthritis treatment during and after pregnancy may experience health consequences beyond impairments to their own physical functioning and quality of life, ones that may lead to worse fetal outcomes, such as prematurity or low birth weight,” said lead author Mehret Birru Talabi, MD, PhD, Division of Rheumatology and Clinical Immunology, Department of Medicine, University of Pittsburgh. “This study highlights clinicians need to make sure that we explain the potential risks and benefits of maintaining arthritis treatment during pregnancy and breastfeeding, and to address patients’ questions and concerns. We also need to make sure that we convey this same information to high-risk OB/Gyns, primary care physicians and other clinicians on the health team, to ensure that our messages are consistent and accurate.”
Data published in 2011 and 2012 demonstrated that TNFi medications (biologics) were safe to use during pregnancy and lactation in women with inflammatory forms of arthritis. Accordingly, the study found that that peripartum use of TNFi increased after the year 2012. Among those who were prescribed TNFi’s, 18 percent of women continued these medications through pregnancy post-2012 versus only 5 percent of women who continued these medications pre-2012 (p=0.006). However, even with well understood safety profiles, up to eighty percent discontinued treatment either in preparation for pregnancy or during pregnancy or lactation. Forty percent of women felt that no medications were safe to use in pregnancy, whereas 41 percent selected prednisone (41%), TNFi (15%), NSAIDs (11%), hydroxychloroquine (9%), and acetaminophen (2%) as safe medications. No women selected sulfasalazine, a pregnancy- and lactation-compatible DMARD, as being compatible with pregnancy and, appropriately, none selected methotrexate or leflunomide as both are teratogens.
Conflicting Advice Deters Consistent Arthritis Treatment
The study found that 68 percent of women discontinued their prescribed TNFi on the advice of their physician and 14 percent stopped TNFi treatment because of a lack of consensus among providers.
“Women reported in our survey, for example, that their rheumatologist would approve using NSAIDs for pain management while trying to conceive, but then hear from their obstetrician that NSAIDs used in early pregnancy carry a higher risk for miscarriage. Such conflicting advice from professionals causes confusion about these, and other, treatments,” said W. Benjamin Nowell, Ph.D., Director, Patient-Centered Research at CreakyJoints and principal investigator of ArthritisPower. “For women to make educated and confident decisions about treating their inflammatory arthritis during pregnancy and lactation, it’s vital that consistent and evidence-based messages about medication safety are being offered by healthcare providers.”
Following a successful pregnancy, 79 percent of women breastfed for an average of seven months (range: <4 weeks to 29 months), but most (78%) avoided using DMARDs or prednisone while breastfeeding. Among women who breastfed, one-third described that breastfeeding was physically challenging because of arthritis pain. However, multiple questions in the survey confirmed that women erroneously believed that breastfeeding was not compatible with use of any medication. Instead, women expressed that their priority was to eliminate medication exposure to their infants, even at the expense of their own physical functioning. Yet, more than half (54%) eventually stopped breastfeeding because their disease activity became too severe to continue to withhold treatment.
“Women do not need to choose between their baby and their body,” added Dr. Megan Clowse, Associate Professor at the Duke University School of Medicine, “instead, their rheumatologists, pediatricians, and obstetricians need to be re-assuring that they can safely treat their arthritis AND breastfeed at the same time.”
Study Design Elicited Qualitative and Quantitative Views on Reproductive Health
Recruited from the CreakyJoints online community as well as CreakyJoints’ ArthritisPower Research Registry, study participants (n=267) had to meet specific age, sex, and health requirements to be eligible. As the current analysis focused on medication decision-making during pregnancy and lactation, an additional inclusion criterion of this study was that respondents must have experienced a pregnancy after their arthritis was diagnosed; 66 of the 267 women (24.7%) met this criterion. ArthritisPower patient governors suggested reproductive health questions for survey inclusion to the study team, which collaboratively developed the comprehensive 183-item questionnaire about pregnancy, fertility, breastfeeding, lactation, and contraception. About one-fourth of the questions requested a free-text, open-ended response.
Most women were white (77%), college-educated (68%), and had rheumatoid arthritis (RA) (89%), but other inflammatory arthritis diagnoses were also represented. The average diagnosis age was 22.2 years old, and the average age at the time of survey completion was 40.3 years. Most women indicated current or historical use of at least one DMARD or prednisone (95%). Women had an average of 1.7 pregnancies after their disease diagnosis (S.D. 1.0), with a range of 1-5 pregnancies overall. On average, 8.3 years (S.D. 6.8) had elapsed since their last pregnancy and the completion of the survey. Forty-seven pregnancies were viable, whereas 19 pregnancies ended in fetal loss.
“At CreakyJoints, it’s central to our education mission to collaborate with researchers who further our understanding of arthritis. We thank our study partners at the University of Pittsburgh and Duke Medical Center for their ongoing work on this important topic and look forward to identifying ways we can better communicate with our patient members and their health care providers about managing inflammatory arthritis during pregnancy and breastfeeding,” said Louis Tharp, executive director and cofounder, CreakyJoints and the Global Healthy Living Foundation.
Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit ArthritisPower.org.
CreakyJoints® is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.
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