In the early weeks after her baby was born, Sarah faced an intense flare-up of her rheumatoid arthritis (RA) that made it nearly impossible for her to lift her little one. “We need more research on medications used during pregnancy and breastfeeding!” she declared passionately during our chat.
I had the pleasure of speaking with Sarah, a participant in our research study focused on rheumatoid arthritis. As a reader of our blog, you might already know that we aim to provide insights on various exposures during pregnancy and breastfeeding. However, many may not realize that we also conduct observational research to better understand chronic conditions and their treatments, ultimately aiming to equip moms like Sarah with essential information about health and medication use during pregnancy. This month’s discussion highlights the importance of research and those brave women who share their experiences to help others.
BETH:
Thanks, Sarah, for sharing your journey and involvement in this important research! As an advocate for mothers with RA and the creator of the popular blog, Moms Moving Forward, your work inspires countless women dealing with chronic illnesses who are either pregnant or trying to conceive.
SARAH:
I’m thrilled to be here and discuss pregnancy research! Since my RA diagnosis, I’ve developed a keen interest in medical research—both on a personal and professional level. It’s remarkable to see the advancements in RA treatment options available now compared to my first pregnancy, which was just six years ago.
BETH:
It’s true! The medical field often lacks comprehensive data on the effects of medications during pregnancy, as women are typically excluded from safety studies for new drugs. What drew you to participate in our Pregnancy Studies?
SARAH:
The need for research on medication use during pregnancy is critical due to potential risks for developing babies. Professionally, I cover emerging research for Health Insights, so I’m somewhat familiar with different types of medical studies. But when I first joined, I wasn’t entirely clear on what “observational research” entailed. My biggest worry was whether I would need to change my medication or take a study drug.
BETH:
That’s a common concern! How would you explain observational research and how it differs from clinical trials, like our pregnancy registries?
SARAH:
I’ve learned that observational research simply means the study observes participants without advising or requiring any treatment changes. Unlike clinical trials, there’s no placebo or tested drug involved. Pregnancy registries gather health and medication information from expecting mothers and compare outcomes with those not exposed to the medications. Throughout my participation, I made treatment decisions alongside my doctor, who knows my medical history best. Plus, the evidence-based insights from your organization helped me understand my medications better and informed my discussions with my healthcare providers.
BETH:
I’m glad we could support you during that challenging time! What ultimately encouraged you to take part in our research?
SARAH:
I’ve participated in two studies, motivated primarily by the lack of information regarding medications during pregnancy. During my second pregnancy, I wasn’t on any RA medications initially, but I experienced a severe flare that made daily activities challenging. My rheumatologist and I decided to restart Enbrel to manage my condition, and I immediately enrolled in the study so that my experiences could support future mothers facing similar decisions.
When preparing for my third pregnancy, my healthcare team and I switched my medication to Cimzia before conception, deciding to continue it throughout my pregnancy and while nursing. I joined the Cimzia & Pregnancy Study as soon as I found out I was pregnant again. It’s heartwarming to know that my experiences contribute to better outcomes for other moms down the line, and I even received a lovely birthday card from the research team for my little one!
BETH:
That’s wonderful to hear! Did you have any initial hesitations about joining the study?
SARAH:
At first, I was concerned about the time commitment. With a toddler and a job, I wondered if it would be too much. However, I learned that participation typically involves about two hours of phone interviews in the first year and just ten minutes annually afterward. My husband was also worried about privacy, so I made sure to ask how my data would be protected. I found out that personal information is kept confidential, and the studies are overseen by a dedicated Human Research Protections Program.
BETH:
It’s great to hear you felt secure in your decision! What was the enrollment process like for you?
SARAH:
I provided information about my health history, prenatal test results, and any medications I used during pregnancy.
BETH:
You mentioned that your primary reason for enrolling was the lack of medication information during pregnancy. Can you elaborate on how you navigated treatment options with your healthcare team?
SARAH:
Yes! My treatment options varied significantly from my first to my third pregnancy. Initially, I relied heavily on my doctors for guidance without doing my own research. During my first pregnancy, my obstetrician had limited knowledge about RA medications, and I ended up only using prednisone. When I flared up postpartum, I had to make the tough choice to wean my son so I could restart Enbrel. I felt I had limited resources to inform my decision.
Fast forward to my second pregnancy, where I experienced a flare-up again but had more data to suggest that my uncontrolled inflammation posed a greater risk than the potential effects of Enbrel. This time, I felt more empowered to advocate for myself. For my third pregnancy, I consulted both my rheumatologist and a perinatologist and conducted thorough research, including what I found on this blog post. It was invaluable to have doctors who were also willing to educate themselves about the best treatment options available.
In summary, Sarah’s story is a powerful reminder of the importance of research in understanding how medications affect pregnancy. By participating in studies, she not only gained knowledge for herself but also contributed valuable data to help guide future mothers facing similar challenges. It’s crucial for women with chronic conditions to have access to evidence-based information, as it empowers them to make informed decisions about their health during pregnancy. For those looking for more resources, check out this excellent guide on pregnancy and home insemination, and if you’re considering your fertility journey, this site is a great authority on the topic.