Background/Purpose: Over the course of my 30+ years living with Polyarticular Juvenile Rheumatoid Arthritis, I have never had long term success on any one biologic treatment, and disease progression continued eventually resulting in a need for a bilateral shoulder replacement surgery which I had in 2018. My husband and I have been hoping to start a family for years but have had to accommodate our plans due to my arthritis. We began seeing a fertility specialist years ago and while my initial fertility lab results were within a normal range, but a major flare prevented us from moving forward with treatments. We are finally in a place now where our family planning conversations can begin again. After an insurance battle early this year, I am now on a biologic that has some data indicating safety and efficacy for women who are pregnant or trying to become pregnant. With the guidance of my fertility specialist, we have added in vitro fertilization (IVF) medications and various supplements, changed my nutritional plan, and incorporated acupuncture into my care plan. Additionally, this May we had our first frozen embryo transfer that we hope to will result in a successful pregnancy.

Intervention: A care plan that empowers me to have a successful pregnancy is my primary focus and goal. In order to do that, careful family planning is essential for my partner and I with my rheumatologist and fertility specialist. Unfortunately, there is not enough data to suggest an ideal care plan for a person like me: someone that grew up with juvenile rheumatoid arthritis and is now of reproductive age hoping to start a family. Neither my fertility doctor nor my rheumatologist has all the answers. I am charged with finding the answers I need, carefully organizing my health information, and coordinating my care between providers. 

Maintenance: The onus is on me to explain my arthritis to my fertility specialist and hope that they are able to make informed care plans based on their experience with others in a similar position. Similarly, communicating with my rheumatologist about my family planning is a responsibility that rests on my shoulders. In order to be an effective communicator, I have to organize my life around these two parts of the healthcare world and find ways to bring them together. Being a planner is critical to my care so that I can ensure all aspects of my healthcare team are coordinating to accomplish my care goal: a successful pregnancy while managing my arthritis. Support from other patients like me is essential, and I have found community through social media channels that keep me connected with others in a similar situation.

Quality of Life: We have been working for years to get my arthritis under control to a point where I would be healthy enough to effectively plan our family. I am thankful that we are finally at a point where we can move toward that future based on my medication plan, my successful bilateral shoulder replacements, and my care plan with my fertility specialist. While my juvenile rheumatoid arthritis symptoms are still present, they are maintained, allowing for better function as I pursue IVF treatment and family planning. The peace of mind that we are now able to work toward my ultimate care goal of starting a family has certainly improved my quality of life.

« Back to ACR Convergence 2021

ACR Meeting Abstracts - https://acrabstracts.org/abstract/family-planning-while-living-with-rheumatoid-arthritis/