Overcoming Tough Choices: Planning a Family with Arthritis... Women Speak Up

Posted On Wednesday, 13 December 2017
Overcoming Tough Choices: Planning a Family with Arthritis... Women Speak Up

While many people think “old” when they think arthritis, millions of young women live with autoimmune forms of arthritis.

The most common form, rheumatoid arthritis (RA) is 2-3 times more likely to occur in women.

RA is not a disease of older adults. Rather, most are diagnosed between the ages of 30 and 50, though RA can start at an earlier or later age. Therefore, RA affects women during their key childbearing years.

Inflammatory, autoimmune arthritis is a chronic condition that causes joint pain, stiffness, swelling and, over time, erosion and decreased movement of the joints. It can also affect other parts of the body, like the eyes, skin or lungs.

Today, there are many different treatment options for autoimmune arthritis, many of which are complex, targeted biologic medicines taken alone or in combination with other medicines, such as steroids. Working with a rheumatologist, each patient needs to find the therapy combination that works best for them, a process that may take months or even years.

Understandably, women with arthritis have concerns about their own health and the health of their future children when thinking about their plans to start or grow their families.

Reproductive Concerns
To better understand women’s concerns, CreakyJoints, a non-profit patient advocacy organization for people with all forms of arthritis, and Duke University conducted a study with patients from CreakyJoints’ ArthritisPower™ research registry to better understand the reproductive concerns of women with arthritis.

The results were presented at the American College of Rheumatology (ACR)/AHRP Annual Meeting in San Diego, California, November 4-8, 2017.

We surveyed 250 women with inflammatory arthritis and found that 59% had fewer children than they desired, while only one third had the full number they wanted. The reasons most women cited for limiting family size were concerns about:

  • Being unable to care for a child due to arthritis (85%)
  • Their arthritis medications potentially harming a fetus or newborn (61%)
  • Passing arthritis on to their child (52%)
Women who made the decision to expand their family size also had worries. Despite growing scientific evidence suggesting that many arthritis medications are safe during both pregnancy and breastfeeding, our survey found that half of the women with inflammatory arthritis reported discontinuing arthritis medications during and after pregnancy, sometimes suffering worsening arthritis symptoms to avoid any perceived risk to the fetus or newborn. Eighty-six percent reported either avoiding breastfeeding to take medications or halting medications in order to breastfeed.

Arthritis medications are not a form of birth control. And although women on arthritis treatment are still able to become pregnant, there are certain medications that are dangerous to the viability and health of a developing fetus. Therefore, it is vital that women use an effective contraceptive method until they are safely ready to expand their family.

Concerningly, we found that 28 percent of women taking methotrexate were not using an effective contraception. When a pregnancy is exposed to methotrexate it has a 40% chance of ending with a miscarriage and any live baby has a 7-10% chance of having a major birth defect.

That’s one reason women need to talk with both their obstetrician and rheumatologist about their arthritis medications before they start trying to expand their family. There are a variety of other treatment options to consider.

About half of the women with RA said that their arthritis worsened with their period – by far the worst time was just before or just as their period started. On the other hand, 70 percent of women taking birth control pills said it had no impact on their RA (meaning, “the pill” did not make it worse) and 10 percent said it made their RA actually feel better (possibly because it helps to smooth the ebb and flow of disease activity that may be associated with the menstrual cycle).

Birth control pills are considered “effective” contraception – but not “highly effective” – since they work only when taken consistently and correctly. “Highly effective” contraception includes tubal ligation or vasectomy (not recommended for expanding families, of course), intrauterine devices (IUDs) and Nexplanon (a contraceptive implant).

Overall, these findings demonstrate that women with arthritis really worry about pregnancy and the impact that their disease and medications might have on their children. Further, it points to a need for better education and communication tools that specifically address these issues.

We recommend women with arthritis get additional family planning advice:

Make Plans: Talk to both a rheumatologist and obstetrician about your personal health, arthritis medications, and what steps to take for a healthy pregnancy and child while maintaining an effective arthritis treatment plan. In addition, start a dialogue about breast feeding early. There are many treatments that are safe to take while feeding an infant, so women don’t need to “sacrifice” their own health in order to do so.

Get Educated: Doctor appointments are quick. Be prepared to ask your questions, by doing some research in advance. Good resources include the website and hotline MothertoBaby, a service of the non-profit Organization of Teratology Information Specialists (OTIS), the nation’s leading authority on the safety of medications and other exposures during pregnancy and while breastfeeding. Women can e-mail, call, or web chat with an expert about their pregnancy and medication concerns (for free). In addition, CreakyJoints just published “Raising the Voice of Patients: A Patient’s Guide for Pregnancy and Family Planning with Rheumatic Diseases,” available for free download at CreakyJoints.org.

Get Involved: Join ArthritisPower, a research registry created by CreakyJoints and the University of Alabama at Birmingham. ArthritisPower also functions as a disease tracker, allowing patients to track their experiences with symptoms and treatments. Simply by joining and providing informed consent, people with arthritis can contribute to researchers’ understanding of arthritis today and in the future. Download the free app in the iOS or Android stores or visit www.ArthritisPower.org to learn more.

Megan E.B. Clowse, MD, MPH & W. Benjamin Nowell, PhD

Megan E.B. Clowse, MD, MPH, is a rheumatologist at Duke School of Medicine and lead investigator of the reproductive concerns study and W. Benjamin Nowell, PhD, is the Director of Patient-Centered Research at CreakyJoints, principal investigator of ArthritisPower and co-investigator of the reproductive concerns study.

Website: creakyjoints.org

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