NOVEMBER 20, 2017
It's Complicated: Starting a Family While Living with Rheumatoid Arthritis
When I was diagnosed with rheumatoid arthritis (RA) at the age of 25, one of the first things I worried about was how my diagnosis might impact my ability to start a family. My doctors told me right away that it wasn’t safe to get pregnant while taking some of the medications they were prescribing to control my RA. I wasn’t quite ready to have kids at the time, but I worried about how I would balance my desire for kids with the need to treat my RA in the future.
As my husband and I discussed starting a family more seriously, I tried to do some research to see what my options might be. Some of what I found was pretty straightforward. Methotrexate, for example, is a medication commonly used to treat RA that is definitely not safe for use while pregnant. Clearly I didn’t want to be taking something that can also be prescribed to purposefully terminate ectopic pregnancies.
However, when it came to the biologic medication I was using to treat my RA, the answer was a lot less clear. Prior to my first pregnancy, there just wasn't very much data on whether or not the medication was safe during pregnancy or breastfeeding. And when I asked multiple doctors about it, the answer I got was pretty much a resounding: “We don’t really know, so let’s not risk it.”
This left me trying to conceive, manage pregnancy, and breastfeed my baby with essentially untreated RA.
As you might imagine, this wasn’t an easy period of my life.
“We don’t really know, so let’s not risk it.”
Even when I was taking all the medications, physical intimacy with RA was difficult enough – so trying to conceive a baby without the medications was a huge challenge. While I may have experienced some of the fabled pregnancy remission the first time around, I learned the hard way that pregnancy comes with its own set of unpleasant symptoms! And, when my RA came roaring back about seven weeks after my first son was born, it was a rather severe emotional struggle to make the decision to wean him so that I could re-start my medications.
Despite the added challenges that RA presented on my path to motherhood, I wouldn’t give up being a mom for anything. And, knowing how much my husband and I love our own siblings, we knew that we wanted more than one kid. So as my first little guy grew, I prepared myself to go through the process all over again.
It took longer to conceive the second time, leaving me dealing with RA that wasn’t fully treated for more months than we would have liked.
Perhaps the state of my disease when I conceived contributed to the outcome of my second pregnancy, because my RA flared badly while I was pregnant. The flare reached a point where I was barely functioning – and I had a toddler to care for! So I asked my doctor about my medication options.
What I wasn’t prepared for was how much the data had changed in just a few short years. During my second pregnancy I was approved to use a medication that I was advised to avoid during my first pregnancy, because now they had enough data to show that it was safe. The same was true for breastfeeding – I stopped breastfeeding my first son in order to take a medication that I later used while breastfeeding my second!
I can’t even describe the amount of relief I felt to have options for treating my RA that were compatible with my desire to get pregnant and breastfeed my baby. I knew these options were the direct result of having more data, so my son and I joined a study immediately. I wanted to make sure to contribute our data so that future moms might have access to even more options than I did.
Today my boys are five and three, and I run a Facebook support group called Mamas Facing Forward for moms and moms-to-be who are living with chronic illnesses. There are currently over 500 women in my group, and I’m so glad that there’s actual data I can give them when they ask about medication during pregnancy and breastfeeding. I’d like to see this data continue to improve, which is why I always encourage them to join studies if they decide to stay on a medication.
I can’t even describe the amount of relief I felt to have options for treating my RA that were compatible with my desire to get pregnant and breastfeed my baby.
But it’s not just during pregnancy and breastfeeding that more data is needed.
Many chronic illnesses, like RA, are diseases that patients will live with for the rest of their lives. This means patients need access to as many treatment options as possible, in case medications stop working or never work in the first place. For example, there are currently ten biologic medications approved to treat RA – and I’ve already been through half of them. It gives me hope to see new medications coming down the pipeline so that I’ll still have treatment options in the future. Research is important because the more data that doctors and scientists have, the better treatment options can be developed. And hopefully those treatments can help all of us live the lives we want despite chronic illness.