The RA Pregnancy Chronicles: Balancing Acts & Difficult Decisions
The RA Pregnancy Chronicles is a series of posts that share my experiences being pregnant while living with RA. This post was written during Week 30 of my second pregnancy.
Life with RA can be a near constant balancing act. You must balance the benefits of medications against the potential risks and side effects. You must balance exercise and continued movement against pain and fatigue. Sometimes you even have to balance your desires and dreams against your realities and capabilities.
Pregnancy is also a balancing act. You must balance the health and well being of the mother against what is best for the developing baby. Considering that 40 weeks is a relatively short period of mother’s life, the pregnancy balancing act is typically weighted towards the needs of the baby. This can sometimes leave a mother to sacrifice her own needs and potentially suffer for months for the benefit of her unborn child.
With my first pregnancy, I was lucky enough to experience remission during the majority of my pregnancy. Unfortunately, I have not been that lucky the second time around. This time my RA started flaring badly even before the end of my first trimester, and it grew progressively worse as the weeks wore on. By 20 weeks nearly every joint in my body was painful and I was waking up every morning with the most extreme morning stiffness I had ever experienced.
By 28 weeks I was in extremely rough shape. I could barely dress myself or put my hair in a ponytail – let alone change a diaper or dress a wiggly toddler. I was having trouble going up and down the stairs and even walking – so keeping up with my energetic son was next to impossible. I knew it was time to visit my rheumatologist to discuss my options.
In general, doctors are usually reluctant to prescribe medications to pregnant patients for fear of causing harm to the developing baby. So my first option would be to do nothing – take no medication – and try to survive the remaining 12 weeks of my pregnancy despite my badly flaring RA.
However, my rheumatologist pointed out that having an out-of-control autoimmune condition was not only making me miserable and putting my joints at risk, but it also presented increased risks for my growing baby. These risks included the potential for low birth weight or premature delivery, as well as an added risk of developing preeclampsia. Although it is always necessary to be cautious in prescribing medications to pregnant women, the potential risks to my baby from my untreated RA do change the risk-benefit balance for considering medication use during pregnancy.
The second option we discussed was the use of corticosteroids, or prednisone. There is a fair amount of data on prednisone use while pregnant, and most studies show that the risks to the baby are relatively low, especially at later stages of pregnancy. (Some studies indicate that there may be a very small increased risk of cleft lip or cleft palate in the babies of mother who take prednisone during the first trimester). I actually took some prednisone during the third trimester of my first pregnancy to help me deal with a bad flare in my hips.
However, prednisone can sometimes boost a person’s blood pressure – and this has been an issue for me in the past. In fact, shortly after starting prednisone during my first pregnancy, my blood pressure increased dramatically. It got so high that I ended up in the hospital at 35 weeks and was diagnosed with preeclampsia, a pregnancy complication that poses risks for mother and baby. I was put on bed rest until I reached 37 weeks, at which point my son was delivered early to end the risk to both of us. So, considering my history with prednisone, my rheumatologist and I decided it was not a good option for me.
The last option that my rheumatologist and I discussed was going back on Enbrel, the biologic medication I use to treat my RA when I am not pregnant. Unfortunately, Enbrel use during pregnancy is not well studied so there is very little data about the potential risks involved. One study from 2009 looked birth defects reported in mothers who used a TNF inhibitor during pregnancy (not just Enbrel but other TNF inhibitors as well). This study suggested that TNF inhibitors might cause VACTERL association (a pattern of birth defects that includes vertebral, anal, cardiac, tracheal, esophageal, renal, and limb defects). However, the conclusions from this study have been widely criticized due to potentially biased study design, limited data, and voluntary reporting. In general, most of the studies that have looked at Enbrel use during pregnancy have not shown an increased risk for a pattern of birth defects. And, because Enbrel is a large protein, recent information suggests that a significant amount of the medication is not even able to cross the placenta to reach the developing baby.
After talking to my rheumatologist, I consulted with my OB, a perinatologist, and a clinical pharmacist. My husband and I worked long and hard trying to balance all the risks and benefits. Eventually we made the difficult decision to go back on Enbrel for the remainder of this pregnancy. So far I have taken two injections and it has made a huge difference in how I feel and my ability to function. I feel much healthier and that makes me feel hopeful that we made the right decision – but I guess only time will tell.
In the meantime, I have contacted OTIS (the Organization of Teratology Information Specialists) to see if I qualify for any of their studies about Enbrel. Hopefully by contributing to a study I can help make these decisions less difficult for future women with RA!
Have you managed RA fatigue better than you used to?