When I was diagnosed with rheumatoid arthritis (RA) at the age of 25, one of my first concerns was how it would impact my ability to start a family. Though I was lucky to have an extremely supportive rheumatology team, I still felt there was an acute lack of information and resources available about this topic. I ended up feeling very alone and confused as I made difficult decisions about my family’s future. Today, I am fortunate to have two little boys—ages 5 and 3—and a little girl on the way! In the hopes that other women will not have to feel as alone as I did, I run a Facebook support group for moms with chronic illnesses called Mamas Facing Forward. We have almost 600 members from all over the world, most of whom live with RA. To get a sense of issues our members wished their rheumatology teams had told them when they were first considering pregnancy, I asked some of them to share their experiences and advice. Here is what I found out.
The Impact of NSAIDs on Ovulation
I didn’t learn about the potential impact of NSAIDs on ovulation until after my first two pregnancies (their use has been shown to inhibit ovulation and reduce progesterone levels in young women, which may undermine fertility1). When I found out about this link through my own education, I was shocked. I had carefully discussed my desire to get pregnant since the time of my RA diagnosis, but the impact of NSAIDs on fertility was never mentioned during a discussion of medication options. I wasn’t the only one who had this issue. “I had taken NSAIDs for over 30 years, yet none of my doctors ever told me (about their impact on fertility),” shared Christina, mom to a 5- and 3-year-old.
TAKEAWAY: Patients need to know which medications— including over-the-counter options—are safe to use for symptom relief without impacting our conception chances.
How to Manage Conflicting Advice
Perhaps the most common issue I hear from women with RA who are considering becoming pregnant is the difficulty they have resolving conflicting advice from various clinicians, especially when it comes to medication safety. More often than not, these clinicians never communicate directly with each other, forcing us to act as “middle men” who then need to make complicated and stressful decisions without clear advice.
“I wish I had been cared for holistically by a team of advocates vs. each physician working in his own silo,” said Jeanmarie, mom to a 6- and 1-year-old. Lindsay, mom to a 4- and 1-year-old, even came to a visit prepared with research to support medication use during breastfeeding, but her rheumatologist wouldn’t even look at it. “As a result, I breastfed without medication and flared to the point of not being able to pick my baby up,”
she said. “I finally gave up breastfeeding. I felt like a failure and suffered from postpartum depression.”
TAKEAWAY: Talk to your patients about the advice they are getting from their entire healthcare team and help them sort through the confusion.
The Truth About Pregnancy Remission
I know from personal experience that remission during pregnancy is not a guarantee, but I’m not the only woman who was led to believe that worsening of disease activity is highly unlikely during pregnancy. “The two worst flares of my life were during pregnancy, and I was completely unprepared (and entirely unmedicated) the first time,” shared Kimberly, mom to a 2-year-old and 3-month-old. “I had dreamed of this magical time when there was no medicine and no pain,” concurred Casey, mom to a 1-year-old. “I wish someone would have been honest with me.”
TAKEAWAY: Don’t unnecessarily inflate your patient’s hopes as they consider becoming pregnant. It’s fine to tell them that some women will see their RA symptoms get significantly better during pregnancy, but be cautious about overpromising.
Prepare Us For Postpartum Challenges
After my own pregnancies, I know the likelihood of a postpartum RA flare is high, so this time around I’m planning accordingly. After my first pregnancy, I, like many others, wasn’t nearly as ready. “I wish my team would have sat me down, warned that a flare was likely, and (explained) what that would look like,” agreed Stephanie, mom to a 2-year-old. Cheryl, mom to a 3-year-old, added that she wishes she had been told that her body might not respond as well postpartum as it had previously to the same biologic. Several moms also said they would have liked advice on how to physically care for a new baby without putting additional stress on their joints. “We wasted a lot of money, time, and anxiety trying to figure out which baby gear was ‘RA friendly’ so I could feel like a competent mother,” said Erin, mom to a 12- and 9-year-old. “Empowerment would have been a great thing to get from a healthcare professional. To have them say, ‘You can do this well, and here’s how.’” Almost all the moms I heard from agreed that they would have liked to be connected to other patients or online support forums so they could discuss their issues with women who have had similar first-hand experiences and could understand their problems.
TAKEAWAY: The finish line for women with RA isn’t the delivery of a healthy baby. For many, the immediate postpartum period is the most challenging part of the journey. Setting up a postpartum flare plan with your patients prior to delivery is often a good idea, especially with the overwhelming responsibilities of a new baby.
So what do I hope that the rheumatology nursing community learns from what I heard from moms with RA? I think the most important things we need from our rheumatology team when considering pregnancy are encouragement, support, and information. We need to know that you are “on our team,” and we need to know what all of our options are before, during, and after pregnancy. That way, we can work together to create the best possible plan to turn our dreams of motherhood into a reality.
Mariah Zebrowski Leach is the creator of the award-winning blog From This Point Forward and manages a Facebook support group for moms with chronic illnesses called Mamas Facing Forward. She has written for numerous prominent health publications and websites.
1. Salman S. Non-steroidal anti-inflammatory drugs inhibit ovulation after just ten days. EULAR 2015. Abstract OP0131.