The RA Pregnancy Chronicles: Life Without RA Medications

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 6 of my second pregnancy.

Before we even conceived our first baby, my husband and I already knew that we wanted to have more than one child. We both grew up with siblings and neither one of us could imagine our lives without them to play with, grow with, squabble with, learn with, and love. We knew right from the beginning that we wanted the same opportunity for our children.

But it wasn’t until Week 6 of my second pregnancy that the challenge of mothering two kids while dealing with a chronic illness really started to sink in for me. My second pregnancy announced itself with worse morning sickness than I had the first time around, which I honestly didn’t even think was possible! One morning after my husband left for work I found myself frantically trying to distract my 18-month-old son with the TV so that I could run over to the kitchen sink and vomit up what little breakfast I had been able to force down. As I stood there, keeled over the garbage disposal retching, I started to wonder how I would ever find the energy to care for two children and my own health issues all at the same time.

Being a parent is all about sacrificing your own needs for the needs of your children. It’s a challenge that every parent faces. But, for those of us living with chronic illnesses like RA, there are all sorts of extra sacrifices, difficulties, and doubts we have to face.

I personally started making sacrifices for my children six months before we even tried to conceive our first baby. At the time, I had been successfully controlling my RA with Enbrel and methotrexate, a combination of drugs that took more than a year of frustrating trial and error to discover. Unfortunately, methotrexate falls squarely into Pregnancy Category X. Originally developed as a form of chemotherapy, methotrexate attacks rapidly dividing cells, which is exactly what an embryo is. Having methotrexate in your system while you are pregnant can cause fetal death or malformation of the embryo. It is actually administered to purposely terminate ectopic pregnancies. And, to make matters worse, it also stays in your system for months even after you stop taking it.

I stopped taking methotrexate six months before our wedding so that it would be completely cleared from my system when we were ready to start trying for a baby. My rheumatologist told me that it was safe to stay on the Enbrel until I found out I was pregnant, but unfortunately the Enbrel alone wasn’t quite enough to keep my RA symptoms under control. This means that I dealt with extra joint pain and fatigue at my own wedding because my RA wasn’t fully treated at the time. On our honeymoon, my new husband had to push me through the art museums in Madrid in a wheelchair. But this sacrifice allowed me to become a mom just two days after our first wedding anniversary.

Since then there have been lots of other difficult choices to make. For example, my RA was completely untreated through my first pregnancy and while I was breastfeeding my son. I personally believe that breastfeeding is the best option for a baby, not to mention that my son and I absolutely loved the bond it gave us, so I made every effort to breastfeed my son as long as possible. Unfortunately, about six weeks after my son’s birth, my completely untreated RA came back with a vengeance. Three months post-partum I reached a point where I literally could not lift or hold my own baby. It was then that I had to make the heart-wrenching decision to treat my RA instead of breastfeeding my baby (a topic I am sure I will write more about as I go through it a second time). I switched to my son formula (and a small supply of pumped breast milk in our freezer) and went back on the Enbrel. My RA improved to the point where I could actually be a mother to my newborn son.

However, because we always knew we wanted more than one child, I never went back on the methotrexate at all. So although my RA has been somewhat improved on the Enbrel since I stopped breastfeeding my first son, my RA has not been completely under control since I originally stopped taking the methotrexate. That was more than three years ago at this point! It has sometimes been quite difficult for me to take care of a baby, and then a toddler, with RA that wasn’t completely under control.

My husband and I knew that I wouldn’t be able to function in this untreated state forever, so we started trying for our second baby as soon as our first son turned one. Unfortunately it took us longer to get pregnant the second time around, which only lengthens the total amount of time I will spend living with RA that is not fully treated. Assuming I am lucky enough to be able to breastfeed my second baby for at least three months, it will be more than four years before I am able to consider going back on all the medications I need to control my RA.

This is a sacrifice that I consider completely worth it as it allows us to have the family we have always dreamed about. But that doesn’t mean it is easy.

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