Mehret Birru Talabi MD, PhD
Associate Professor of Medicine with tenure, University of Pittsburgh, Division of Rheumatology and Clinical Immunology, Pittsburgh, PA, USA
Director of Women’s and Reproductive Health Rheumatology Clinic, UPMC, Pittsburgh, PA, USA
One major challenge arises during pregnancy, where clinicians must balance maternal disease control with medication safety. Several commonly used and effective treatments—such as methotrexate, mycophenolate, and cyclophosphamide—are teratogenic and should be discontinued before conception. Additionally, chronic inflammatory disease and certain medications may impair fertility in both men and women, yet fertility preservation strategies remain underutilised by patients and poorly understood. Pregnancy itself appears to exacerbate disease activity or trigger complications, particularly in conditions like systemic lupus erythematosus or antiphospholipid syndrome, and especially when disease is active at the time of or during pregnancy. This increases the risk of miscarriage, preeclampsia, preterm birth, and fetal growth restriction. Patients often face barriers to making informed reproductive decisions, receiving inconsistent guidance from clinicians about medication safety, pregnancy readiness, and contraceptive effectiveness. Moreover, rheumatologists, obstetrician-gynaecologists, primary care physicians, and fertility specialists may lack specialised training in reproductive issues specific to rheumatology, leading to fragmented care and missed opportunities for early intervention or anticipatory care. While these challenges are significant, many are addressable—and importantly, many individuals with rheumatic diseases do and will go on to have healthy reproductive outcomes. These challenges overall underscore the need for integrated, person-centred approaches to reproductive health in the context of rheumatic disease.
Male patients with rheumatic diseases face a distinct set of reproductive health considerations, which the field is beginning to recognise. Certain treatments, particularly cyclophosphamide, can impair fertility potential, and sulfasalazine has been shown to affect sperm count and quality. Our team’s research also suggests that some male patients across rheumatic conditions experience fatigue, pain, and physical weakness, which can impact sexual function and their parenting capacities. Male patients are rarely screened for reproductive health issues, and many may feel uncomfortable initiating these conversations or are unsure which clinician is best qualified to address their concerns.
The management of reproductive health in patients with rheumatic diseases has made meaningful progress but remains uneven and fragmented across care settings. Encouragingly, the field is moving toward more person-centred, interdisciplinary approaches that better reflect patients’ needs. Still, sustained effort is required to ensure reproductive health is treated as a core component of rheumatologic care—not as an ancillary concern or a niche topic.
I believe that knowledge is central to addressing many of the reproductive health challenges in rheumatology. At this year’s International Conference on Reproduction, Pregnancy, and Rheumatic Diseases, several speakers emphasised that we must protect women with rheumatic diseases through research—not from research. That sentiment is incredibly important. Historically, pregnant individuals and those with pregnancy capacity have been excluded from drug and vaccine trials, leaving rheumatologists with a limited set of therapeutic options to offer patients during pregnancy. This exclusion has paradoxically made pregnancy less safe for these patients, especially when the medications that are considered pregnancy-compatible are ineffective at controlling maternal disease. We know that uncontrolled rheumatic disease contributes to adverse outcomes for both the pregnant individual and the fetus, so undertreatment is not a viable option. Rheumatologists must apply our understanding of medication mechanisms and molecular properties to guide prescribing decisions, in line with recent EULAR guidance on pregnancy-compatible therapies.
Patients also need access to accurate, actionable reproductive health information. Our research—and that of others—has revealed persistent knowledge gaps. For example, some patients mistakenly believe that having a rheumatic disease renders them infertile, which may lead them to forgo contraception despite not intending pregnancy. Other patients have a limited understanding of contraceptive effectiveness, erroneously believing that barrier methods like condoms are as effective as oral contraceptives or intrauterine devices. Many patients also believe that no medications are safe during pregnancy or lactation, assuming all drugs pose harm to the fetus or neonate. These misconceptions often mirror gaps in clinician knowledge and are compounded by the growing spread of medical misinformation and distrust. We need strategies to strengthen patient education, using evidence-based resources that reflect patients’ priorities, counter medical misinformation, and support informed decision-making.
As mentioned, our clinical and research team views knowledge as a cornerstone of improving reproductive outcomes and helping individuals safely build the families they desire. ReproKnow is a brief, 10-item questionnaire we developed and validated to assess reproductive health knowledge in women with rheumatic diseases. It is suitable for both clinical and research use, has been translated into multiple languages, and has been incorporated into diverse care settings in several countries. I primarily use ReproKnow in research, most recently within our registry of reproductive-age individuals with rheumatic diseases, where we are studying the relationship between reproductive knowledge and downstream outcomes.
“FemTech” or “Reprotechquity” are terms used to describe online, artificial intelligence-powered, or app-based resources that focus on women’s health. Our team is also working to deliver information directly to patients through digital “FemTech” platforms. For example, we developed and pilot-tested an interactive online decision aid called MyVoice:Rheum, designed for women with rheumatic diseases. Users of MyVoice:Rheum showed improvements in both reproductive knowledge—measured by ReproKnow—and communication self-efficacy, suggesting that the tool may help facilitate more informed and productive sexual and reproductive health-related conversations in rheumatology settings. While MyVoice:Rheum is not yet publicly available, we are actively developing an implementation and dissemination strategy for patients with rheumatic diseases.
