A wish list from your patients with rheumatoid arthritis who are-or who want to become-mothers.
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Mariah Leach, 35, of Louisville, CO, has given birth to three children since being diagnosed with rheumatoid arthritis (RA) at the age of 25. Her experiences prompted her to create a Facebook community that focuses on chronic illness and motherhood called Mamas Facing Forward, which currently has almost a thousand members from all over the world. She is in the process of launching a corresponding website to consolidate existing resources on this topic. Her own experiences and interviews of other mothers inform the following “wish list.” (Please note, some last names have been excluded to protect patient privacy.)
For many women who receive a diagnosis of RA, one of their first concerns is how the disease will impact their ability to start, expand, or care for their family. Motherhood is a journey with many stages, and women living with RA need the advice and support of their doctors to get through all of them.
#1: Please remember that motherhood may be very important to us.
Motherhood is an extremely important life goal for many women. “Doctors seem quick to advise us not to have children or any more children because parenting with RA can be difficult, but some days my children are the only things that keep me pushing through,” says Amy, a mother of four who has been living with RA for 15 years.
Many mothers with RA shared that their doctors weren’t as supportive or empathetic about their motherhood goals as they would have liked. “We’re on the fence about baby number three, and my first rheumatologist would make dismissive comments before quickly moving on to the next subject,” says Jaime, a mom of two who has been living with RA for the past 3 years. “He may have been trying to tell me it was more important to focus on my health right now, but some more compassion and acknowledgement of the lost freedom to choose would be nice. No matter what, we still want our family planning decisions to be based on our families and not our disease.”
#2: Be aware of the most recent data on the subject and share it with us.
The data concerning RA treatments during pregnancy, especially the use of biologics, has changed dramatically in just the past few years. A study presented at the 2017 American College of Rheumatology Annual Meeting (ACR 2017) shows that biologic use during pregnancy does not increase infant infection risk. In addition, the US Food and Drug Administration (FDA) recently approved a label update for certolizumab that included pharmacokinetic data showing negligible to low transfer through the placenta and minimal transfer to breast milk.1 Women today have many more options, and we need your support in developing a treatment plan compatible with our motherhood goals.
We also need honest information about the likelihood of pregnancy remission. A simple Google search will yield many articles with words like “majority” and “most,” but application of validated disease indices in recent studies has confirmed that only 20% to 40% of women actually achieve remission by the third trimester.2 Furthermore, nearly 20% will have worse or moderate to high disease activity during pregnancy.3 If patients believe that remission is highly likely, it may make it even more difficult for them to cope if they end up dealing with disease activity during pregnancy.
Women with RA who are trying to conceive also need to know about the potential of nonsteroidal anti-inflammatory drugs (NSAIDs) to inhibit ovulation.4 “After being diagnosed with arthritis as a child, I had taken NSAIDs for over 30 years and none of my doctors ever told me they might have an impact on ovulation and my chances of conception,” says Christina, now a mother of two. This information is especially important if changes have been made to a patient’s treatment plan as part of family planning, as she may unknowingly turn to over-the-counter NSAIDs to provide additional relief.
#3: Assist us with conflicting medical advice.
For many patients, the possible risks and adverse effects of the medications used to treat RA can be very frightening, and this fear can be enhanced when considering the impact on a developing baby. Unfortunately, it is very common for rheumatologists and obstetricians (and other doctors involved in a patient’s care) to give conflicting advice about which treatments may or may not be safe during pregnancy. More often than not, these doctors never communicate directly with each other, forcing patients to act as “middle men” and leaving them to make complicated and stressful family planning decisions essentially on their own.
“I wish I had been cared for holistically by a team of advocates versus each physician working in his own silo,” says Jeanmarie, a mother of two. If at all possible, mothers with RA would love for doctors to communicate directly with one another to sort out conflicting medical advice and offer us a unified, pregnancy-safe treatment plan. In the event this isn’t possible, please at least be open to letting us share our own research on the subject, so we can work as a team to choose the best treatment options available for our pregnancies (and breastfeeding, if desired.)
#4: Give us tools to prepare for physical and emotional postpartum challenges.
The postpartum period is a difficult and demanding time for any new mother, and more so for women living with RA who are likely to experience a postpartum flare. “I didn’t get enough support on how to manage everyday tasks,” says Laurie Proulx, mother of two and Vice President of the Canadian Arthritis Patient Alliance (CAPA). “My hands are badly damaged, and I worried tremendously about how to handle the everyday things like holding my babies, feeding them, and putting them in and out of car seats and strollers.” Inspired by her own experiences, Laurie worked with CAPA to develop a patient-authored, physician-reviewed resource on pregnancy and parenting with arthritis.
Cheryl Crow, a mother of one with a master’s degree in occupational therapy, agrees that moms need more resources. “An occupational therapist should be a standard, common sense referral for new moms with chronic pain conditions that make them more susceptible to repetitive stress injuries and mental health challenges postpartum,” she says. “Mental health is also part of the OT scope of practice-we can provide daily living strategies as well as emotional coping strategies,” Cheryl emphasizes.
In general, patients living with RA usually need more support in caring for their mental health. “I was diagnosed with arthritis when I was 2 years old, but no one ever told me that having an incurable condition would cause me to be more susceptible to mental illness,” confides Allison. “I’m now 39, and I’m just learning how to deal with anxiety.” The need for mental health resources is especially important for new mothers, so referrals to qualified therapists and other useful resources would be greatly appreciated.
#5: If we want to breastfeed, please support us.
At ACR 2017, Dr. Megan E. B. Clowse, Associate Professor of Medicine in the Division of Rheumatology and Immunology at Duke University, gave an update on biologics in pregnancy and breastfeeding.5 During the presentation, she unequivocally told the audience that women should not need to choose between treating their RA and breastfeeding, and that the guilt mothers face over this choice is unnecessary as there are safe treatment options available today.
This guilt is recognizable by many mothers with RA, who in the past were strongly advised not to breastfeed their children, “I felt like a huge pain to my rheumatologist when I tried to continue breastfeeding for as long as I could,” says Laura, diagnosed with adult-onset Still’s disease when her fourth baby was just 2 weeks old. “Breastfeeding was important to me, and I would love more education for providers on the many reasons women choose and desire to breastfeed.”
#6: Provide encouragement and help us face new challenges as our children grow.
While the birth of a baby is a very important accomplishment, every stage of motherhood comes with unique challenges for mothers living with RA. While we’ll likely need the most advice and support from you during the family planning and pregnancy stages, we still need you to keep our roles as mothers in mind as you continue to provide treatment going forward.
“It would be helpful if doctors could acknowledge the amount of work that mothers do regardless of their child’s age. So often I’ve had doctors tell me to ‘get more rest’ or ‘try not to do so much,’ but how am I practically supposed to rest with so many kids in the house?” asks Michelle, mother of four. An understanding ear and suggestions that are practical for facing the day-to-day tasks of motherhood would be very useful.
No matter what stage of motherhood we are in, please ask us how we are doing and whether our symptoms are affecting our family. We’d love for you to be open to troubleshooting any issues we are currently facing because of our RA, and we’d very much appreciate if you could pass along any resources that might help us better manage every stage of motherhood.
1.CIMZIA® (certolizumab pegol) label update marks major advance for women of childbearing age with chronic inflammatory disease in the U.S. [press release]. Brussels, Belgium: UCB; March 22, 2018.
2. Krause ML, Makol A. Management of rheumatoid arthritis during pregnancy: challenges and solutions. Open Access Rheumatol. 2016;8:23-36.
3. de Man YA, Dolhain RJ, van de Geijn FE, Willemsen SP, Hazes JM. Disease activity of rheumatoid arthritis during pregnancy: results from a nationwide prospective study. Arthritis Rheum. 2008;59:1241-1248. doi:10.1002/art.24003.
4. Salman S. Non-steroidal anti-inflammatory drugs inhibit ovulation after just ten days. Presented at: European League Against Rheumatism (EULAR) Congress 2015; June 10-13, 2015; Rome, Italy. Abstract OP0131.
5. Clowse M. 2017 Update: Biologics in Pregnancy and Breastfeeding. Presented at: American College of Rheumatology Annual Meeting 2017; November 3-8, 2017; San Diego, CA.