Some women with rheumatoid arthritis (RA) are taking matters into their own hands when it comes to fertility and family planning.
RA presents many problems for people, from severe joint pain to stiffness to even joint deformity. It can affect the skin, heart, and lungs, too.
The autoimmune disease can also have major impacts when it comes to having children.
Pregnancy and childbirth can be intimidating for anyone, and fertility concerns are a real issue for many women.
The reality for people with RA is that both the disease and its treatments can make things more difficult — and at times more dangerous — for them to get pregnant, stay pregnant, and raise children.
Medications, mobility, and sleep
While much has been said about the possibility of RA going into remission during pregnancy, there are still other matters that need to be considered when a woman with RA decides to start a family.
Often the medications used to treat RA are not safe to be used if someone is trying to get pregnant.
Methotrexate is a primary example of one such drug. It has been linked to a higher risk of birth defects and other pregnancy complications in women who are taking it.
Other RA medications, like certain biologics or chemotherapy drugs, cannot be used while pregnant or breast-feeding.
There is also the complication of a suppressed immune system that could leave a pregnant mother and her baby more susceptible to illness or infection during pregnancy.
Another factor for women with RA deciding whether or not to have children is a perceived (but not always true) link between autoimmunity and infertility, as well as the mother’s ability to physically care for a child once they are born.
RA can be debilitating and painful as well as cause limitations in mobility.
Women with RA also often need more sleep than others without the condition. And most new mothers will acknowledge that sleep is a luxury not often encountered when caring for a newborn baby.
Taking matters into their own hands
Some women with RA are looking to people with other conditions, like certain cancers or autoimmune diseases, and taking a cue from them regarding family planning.
In fact, medical conditions are one of the primary reasons why women will opt to freeze their eggs.
“A cousin of mine froze her eggs in order to undergo cancer treatment right around the time I was diagnosed with RA,” Casey Smith, 22, of California, told Healthline. “I spoke with my OB-GYN about doing the same since I was already going to be considered a high-risk pregnancy anyway because of my RA and history of RA drugs and complications. I wanted to get to a place where my inflammation markers were down, and I was feeling stronger and healthier before I took a break from methotrexate, and so I considered freezing my eggs before being on it long-term.”
Smith said she had just received an inheritance, so she could afford the sometimes costly process of egg freezing and in vitro fertilization (IVF).
Not everyone can afford IVF and the freezing of eggs or sperm. Health insurance doesn’t cover all of the process and it can become costly.
Smith is grateful she had the option.
“I am not ready to have kids yet, but my methotrexate-free eggs will be awaiting me when and if I become ready,” she said. “I’d also love to hire a live-in nanny or au pair to help me out with the kids on painful flare days. But I’m young and newly diagnosed, so kids are a ways off.”
A difficult journey
Stephanie D. of Virginia, (who declined to give her last name due to privacy concerns) is 39 years old. She has had RA for 17 years and she has a different story to tell.
Stephanie has a 5-year-old daughter, but it took her three years to get pregnant.
“I stopped methotrexate and stayed on Remicade,” Stephanie told Healthline. “I also endured three years of Clomid and IUI, none of which were covered by insurance. I gained 40 pounds. I have worked full-time since 2000 and could barely do more than go to work. After three years the doctors suggested I stop trying, and go back on methotrexate. Four weeks later I discovered I was pregnant.”
It wasn’t an easy nine months.
“I didn't have any nausea or cravings, but did have some depression issues because I had to stop my antidepressants also once I found out I was pregnant,” she recalled. “Seven weeks before my due date I failed the glucose test and was diagnosed with severe gestational diabetes that required seven insulin shots a day. Two weeks of those shots and I decided I was one and done.”
Stephanie’s daughter was 4 pounds when she was born and lacks an enzyme to digest non-organic dairy products. Other than that, she is happy and healthy.
“I was unable to breast-feed due to supply issues, which turned out to be a blessing so I could go back on my methotrexate,” Stephanie said. “I have not regretted my decision to only have one child. Motherhood plus RA plus a full-time job makes me more tired than I have ever been. Most mothers bemoan their body's changes. For me, my remission is not the same. Fortunately, with a daughter who started day care at 6 weeks I have not been sick — and neither has she. I joke that the little breast milk she did get gave her the good side of my super overactive immune system.”
Stephanie participated in an OTIS study out of the University of California system. It was a non-intrusive study that observes women with autoimmune diseases through conception, pregnancy, and one-year post delivery.
Stephanie’s story is part of a stream of commentary on active Facebook support groups for people with RA.
Many women have children later in life due to trying to first get control of their illnesses, or, they eschew having kids altogether because of their medical conditions.
Some opt to only have one child because of the physical demands of being both a mother and a person with a chronic illness.
Others can’t have more than one. Others can’t have any.
Some will do IVF, some will adopt.
A common sentiment echoed among people with RA who don’t have children: “I can barely care for myself let alone a child.”
Every pregnancy is unique
In perhaps a cruel twist of fate, RA is also most likely to strike women in their 20s and 30s, the prime childbearing years.
But patients needn’t fear. There are resources in place for anyone struggling with fertility. This includes high-risk pregnancies, as well as people with RA.
Women who live with RA should discuss their plans to have children with their doctors and figure out the best, safest course of action when it comes to treatment and symptom management.
Hope isn’t lost, either, for people with RA trying to get pregnant. According to the Arthritis Foundation, while women with RA often have fewer children, they should not have any greater problem getting pregnant than other women.
But, as was Stephanie’s experience, other studies state that women with RA are more likely to have premature babies. Nonetheless, it seems that the biggest concern among rheumatologists when it comes to pregnancy is the diminished treatment options during the period of trying to conceive and during pregnancy, when patients may flare while going off of their normal RA drugs.
Most doctors agree, however, that it is safe for women with RA to get pregnant, and if they cannot do so on their own, that it is safe for them to explore options when it comes to fertility treatments like IVF and egg freezing.