CreakyJoints is dedicated to research that addresses the real concerns of people living with arthritis. An important and often under-addressed and un-researched concern is reproductive health and family planning.

Women with arthritis often wonder whether they should have children or whether they will be able to have the number of children they desire. They also worry that oral contraceptives may worsen their arthritis and that arthritis medications will put the fetus or newborn at risk. Working with the Patient Governors of our ArthritisPower research registry, we developed a reproductive survey to further understand these concerns.

Women with arthritis are choosing to have fewer children

We surveyed 250 people in the ArthritisPower research registry and CreakyJoints community and found that 59% of women with inflammatory arthritis had fewer children than they desired. Only a third had the full number they wanted.

The most common fears that limited family size were:

  • Being unable to care for a child (85%)
  • Arthritis medications potentially harming a child (61%)
  • A child developing arthritis (52%)

Concerns about arthritis medication’s impact on newborn

Despite growing evidence that suggest many rheumatic medications may be compatible with pregnancy and breastfeeding, half of the women stopped taking arthritis medications during pregnancy and/or breastfeeding, sometimes suffering worse arthritis symptoms, to avoid any perceived risk to the fetus or newborn.

Of those wanting to breastfeed, 86% reported either stopping breastfeeding to take medications or avoiding medications to breastfeed.

“The findings show us that women with arthritis really worry about pregnancy and the impact that their disease and medications might have on their children. It is also clear that many of them aren’t informed about the current data and would benefit from better education and communication tools that specifically address these issues. My goal is to help women build the families that they want, and this study demonstrates that many women with arthritis aren’t there yet,” said Megan E.B. Clowse, MD, MPH, a rheumatologist at Duke School of Medicine who worked with us on this study.

To address this unmet need, CreakyJoints developed and published the next edition in its Raising the Voice of Patients series, patient guidelines on family planning for people living with autoimmune arthritis.

Methotrexate and pregnancy

The most alarming discovery from this study was that 28% of women taking methotrexate were using ineffective contraception.

Below is how we classified the effectiveness of different contraception:

  • Highly effective: Tubal ligation or vasectomy, IUD, Nexplanon
  • Effective: Progesterone-only pill, estrogen-containing pill, Depo-Provera injections, Ortho Evra patch or
  • Ineffective: Abstinence, patient didn’t think she could get pregnant, withdrawal, rhythm method,
    condoms, diaphragm, and none

Methotrexate carries risk for miscarriage and birth defects. It’s important people do not get pregnant or conceive a child while taking methotrexate. For women, recommendations vary from 1 month to 3 months as to how long you should be off methotrexate before getting pregnant. The package insert recommends male patients be off methotrexate for 3 months.

Certain antibiotics such as “sulfa” drugs (i.e. Bactrim®) should not be taken with methotrexate. Check with your physician before taking an antibiotic with your methotrexate.

It’s important to note that it’s a common myth that patients taking methotrexate can never have children. Patients can work with their rheumatologist to go off methotrexate for a period of time to clear it from their system.

Oral contraceptive pills and arthritis

Of the 135 of women who report ever using oral contraceptive pills (OCP), 70% report no impact of the pills on their arthritis. 9% had improved arthritis and 10% had worsened arthritis.

Half of women surveyed reported that their menstrual cycle affected their arthritis disease activity. Of those, the vast majority (60%) reported worsening symptoms just prior to or during (36%) their menstruation.

Multiple women reported that taking OCPs continuously, and thus avoiding their monthly menstruation, seemed to decrease their pre-menstrual flares.

Why is this important for you as a patient?

Our findings demonstrate that women with arthritis have real concerns about how to balance their arthritis treatment with family planning, pregnancy and breastfeeding. There is a need for more comprehensive education and communication tools specific to women’s health concerns. There is also a need for more research to understand how arthritis treatments impact women’s reproductive health and their ability to mother her children as she desires.

Why is this important for doctors/healthcare providers?

Rheumatologists and high risk OBGYNs need to counsel women about their treatment options before, during and after pregnancy to help patients make decisions about their disease management. There is also a need to embark on more women-specific research and develop education tools to facilitate those discussions and guidance.

The results of this study was first presented at the American College of Rheumatology (ACR) Annual Meeting, the largest global rheumatology medical conference. Rheumatologists and researchers from across the world meet to discuss clinical pathways, treatments and research. See the full abstract here and here.

Watch Dr. Ben Nowell, CreakyJoints’ Director of Patient-Centered Research and Principal Investigator for ArthritisPower, explain the study at ACR.

To participate in studies like this, join CreakyJoints’ research registry, ArthritisPower. ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone and inflammatory skin conditions.