As rheumatology nurses, we see many patients in what should be the prime years of their lives. In their 20s or 30s, I currently have numerous recently married women in my practice as patients who have a new diagnosis of rheumatoid arthritis (RA), dealing them a crushing blow just as they are starting to think about starting a family.
Fortunately, we have come a long way in the last two decades and gained considerable experience with both biologic and nonbiologic disease modifying antirheumatic drugs (DMARDs), making what was once a harrowing journey into pregnancy something much more manageable. There are still valuable lessons, though, that we can learn from our early experiences with biologic DMARDs.
One of my patients from early in my nursing career, CS, was diagnosed with juvenile RA as a 3-year-old. As she entered her mid-20s, she started to think about starting a family. While her rheumatologist initially suggested that CS discontinue all medications except for prednisone, CS’ disease activity was too significant for her to comply with his suggestion and she continued on etanercept until she indeed became pregnant in 1999.
CS was among our lucky RA patients whose disease goes into clinical remission during pregnancy, although her disease came screaming back shortly after giving birth to a healthy son. CS’ lactation consultant informed her that it was OK to go back on etanercept while breastfeeding her newborn, but her rheumatologist disagreed, telling her that should only go back on the drug if she stopped breastfeeding. She continued the etanercept while breastfeeding and trusted her lactation consultant.
Three years later, CS decided it was time to try for a second child. This time, she stopped taking etanercept once she began trying to become pregnant, Unfortunately, she suffered a miscarriage, and her RA spiraled out of control. Every few weeks, she came in to have 50 cc of fluid or more aspirated from her swollen knees, ankles, and wrists. After a few months, CS was worn down, ready to give up on her hopes of having another child so that she could restart her biologic.
Unfortunately, in 2002, there was a national shortage of etanercept, and CS’ rheumatology team could not get her access to the drug. It was a rough few weeks, but CS finally was able to restart etanercept once the shortage resolved and she became pregnant soon after getting access to the biologic. Her second pregnancy, unfortunately, was not as kind to her disease as the first, and CS chose to stay on etanercept throughout the pregnancy and during her months of breastfeeding.
Fortunately, there were no drug-related health issues with either of CS’ children. At the time of her pregnancies, that was still a significant concern in rheumatology, although with experience, we are no longer as reticent to keep our patients on biologic therapy as we once were.
Another patient I remember from early in my rheumatology nursing career was LW, a woman with RA in her late 20s who was being treated with methotrexate in 2003. LW was on birth control, as we always recommend for our sexually-active patients taking methotrexate. Due to advancing disease, LW was referred to orthopedics for wrist fusion surgery. We held her methotrexate in the 2 weeks before the surgery. Unfortunately, her recovery was complicated by a post-surgical infection that required antibiotics. The infection soon resolved, but we think that the antibiotics affected her birth control, and LW became pregnant.
As with CS, LW’s disease went into remission during pregnancy without any medication, and it remained that way until she began to wean her son from breast feeding. At that point, CS’ RA returned worse than ever, to the point where she said she was having trouble with the day-to-day care of her son. We started CS on adalimumab to get her disease under control.
Eight years later, while on abatacept, LW became pregnant for a second time. She stopped the biologic after learning of the pregnancy and again was fortunate that her disease went into remission during her pregnancy (she wasn’t the first nor the last patient to tell me that she wished she could feel the way she felt when she was pregnant all the time).
LW’s disease again flared when she discontinued breastfeeding and did not improve even with the restart of abatacept. She was switched to etanercept, which has successfully kept her in remission for the last few years.
So then what did I learn from these two patients?
1. It is difficult for our patients to get pregnant when their RA is active. Yes, there are potential risks in keeping a patient on biologic therapy as they try to get pregnant, but we are learning with more and more experience that, fortunately, these risks are relatively low. Today, I typically try to keep my RA patients on biologic therapy until they become pregnant and only then taper or stop the medication if their disease remains in remission during pregnancy.
2. Unplanned pregnancies can happen anytime, even when our patients are on birth control. At my current practice, we have our female patients of childbearing age sign a “Pregnancy Pact” if they are being treated with either methotrexate or leflunomide to reinforce the dangers of these medications on the fetus. It helps get the message across, but is obviously not a foolproof guarantee.
3. As rheumatology nurses, we do not have all the answers. Talking about family planning adds time and complexity as we treat patients with autoimmune diseases, but it is necessary in any holistic approach to disease management.
4. Trust your patients. I have pictures of both CS and LW in my office with their babies. When I have a young woman with RA who is considering becoming pregnant, I show them the pictures to reassure them that “We can do this together and safely.”
None of our patients should be discouraged from starting a family. It is our job to support and educate, and to make sure our patients know that we care about them as individuals. We have the tools in our treatment arsenal to keep our patients’ babies safe while also reining in their disease activity. In some cases, it can be a tricky risk/benefit balance, but there are so many happy memories in my career from helping women with RA have a successful pregnancy. There are few things that have been more personally rewarding.
Iris Zink, MSN, NP, RN-BC is a nurse practitioner at Lansing Rheumatology in Lansing, Michigan, and Immediate Past President of the Rheumatology Nurses Society.