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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • Jeanmarie
    5 years ago

    Good for you! I know it was a tough decision! My husband and I plan on trying to conceive in the near future with our second child and I recently met with my OB and my rheumatologist and they both encouraged me to remain on Remicade infusions during my pregnancy. I used Prednisone during my first. I’m nervous to do this again with an active toddler running around! I am very thankful to have found your blog. :). Take care!

  • Mariah Z. Leach moderator author
    5 years ago

    Hi JM~

    I just responded to your comment on an earlier post. ~;o) I also used Prednisone with my first and then, as this post tells, the Enbrel for most of my second pregnancy. After lots of research and consulting my rheumatologist, my son’s pediatrician, lactation consultants, and available literature I also made the decision to stay on Enbrel while nursing – and I’ll be sharing more about these decisions in future posts! Hang in there and, again, please shoot me an email if you have additional questions or just need to chat with someone who understands! FromThisPoint.Forward@gmail.com!

    ~Mariah~

  • elisa
    5 years ago

    Can I ask why plaquenil wasn’t a part of the conversation? My OB’s and rheumatologist all suggested I take it, but since I went into remission I decided to not take any drugs.

    Also when I was struggling with not breastfeeding versus going on drugs for my flare, I did a lot of research and spoke with multiple rheumatologist as well as.my children’s pediatrician’s and breastfeeding consultants. Everyone was on board with my starting humira. The protein is very large so it doesn’t cross into the breastmilk. That’s part of the reason it needs to be taken as an injection. It’s too large to even be digested. There are currently studies being done on breastfeeding and humira. So in the end I decided to go on Humira and continue breastfeeding. My goal of one year is almost conplete, and my son is the picture of health. My older son has had virus’s and my little one has managed to not catch anything from his brother. So I am happy with my choice.

    -elisa

  • Mariah Z. Leach moderator author
    5 years ago

    Hi Elisa ~

    Plaquenil has never been part of the conversation with my rheumatologist – I get the impression that he thinks my RA is too severe for plaquenil to be effective. But you do make a good point that it is a medication option that I believe is considered safe for pregnancy and breastfeeding! So if it works to control your RA it is certainly worth talking to your doctor about!

    Props to you on making it a year nursing! Good for you! As I mentioned above I did eventually make the decision to stay on Enbrel while breastfeeding, and I am literally nursing my six week old as I type this! ~;o) However, I don’t think I will be able to make it quite as long as the Enbrel just isn’t enough to control my RA by itself. Despite taking it and a small dose of prednisone I am struggling. So I am hoping to give my little guy a few good months of breastfeeding before going back on the methotrexate – which I haven’t been on since about six months before my wedding, almost 4 YEARS AGO! In any event I am sure this is a topic I will write about in future posts so stay tuned if you are interested!

    ~Mariah~

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