Pregnancy and the Remission Expectation
I did not make the decision to become pregnant lightly. My husband and I knew that we both wanted kids, and agreed on this common goal before getting engaged. The first year of our marriage certainly put the “in sickness and in health” portion of our wedding vows to the test, as that was the year my Enbrel lost its effectiveness after a seven-year stretch of successful treatment, which led to a flare that lasted three months. I was on extended sick leave from work until the Orencia I was put on started showing results. My husband and I determined it would be best to begin exploring the process of adoption. I was in so much pain, I didn’t see how I could handle pregnancy.
However, about a year later a number of factors came together, the strong desire to have a biological child chief among them, and we decided I would resign from my job in order to go off of my medications and try to get pregnant. My social work job was very stressful, and I didn’t see how I could manage it while off of meds, knowing how my body had reacted in the weeks during the Enbrel-Orencia transition. I had discussions with my rheumatologist and OBGYN, and both anticipated that I would have a healthy pregnancy, and could take prednisone if necessary. And, of course, there was always the chance that I might go into remission.
Doctors do not completely understand why the majority of women with rheumatoid arthritis go into remission during pregnancy, although they suspect that it is in relation to the necessary changes a woman’s immune system makes in allowing a foreign body to thrive inside the system, rather than making the standard response of attack. RA is caused by a confused immune system that is attacking the body, rather than germs and viruses. Therefore, many theorize that as the immune system refrains from attacking the growing baby, it also refrains from attacking joints, tendons, tissues and organs. While there is still much to learn about how the immune system functions, researchers have determined that approximately 80-85% of women with RA do indeed go into remission during pregnancy.
When it came to “the remission expectation,” I took a “hope for the best but prepare for the worst” approach. Generally, when it comes to health issues I’ve been an outlier. So if there is a 15% chance that my RA wouldn’t go into remission, I was not going to plan on a symptom-free pregnancy. I knew there was a chance that I would have pain and swelling, and that my symptoms might be extreme given that there were very few medications that would be safe for me to take and that my body would be carrying the additional weight of a growing baby. I worried that I might end up with a flare as bad as the one that put my on extended sick leave a year earlier. In light of that possibility, I shifted from working temporary part-time instead of full-time, so that if I did end up needing to spend the majority of the day in bed, I could.
My experience ended up falling somewhere between the hopes that my doctors and relatives shared about the potential for remission and my greatest fears about how I would fare off of RA drugs. I was blessed to be able to have not one but two healthy pregnancies, 26 months apart. However, my RA did not go into remission. Many people assumed that my RA was in remission because I functioned pretty well off of meds. I attribute faring better than I might have to the improved self-care my reduced workload allowed. I could take naps and go for walks, swims and/or prenatal yoga sessions on a daily basis. When I worked full-time, I had to push through pain and fatigue to make it to the end of the workday, and then was often too tired and in too much pain to exercise in the evenings. In contrast, during my pregnancies I worked at low-stress jobs 4-6 hours a day, and had the flexibility to take days off as needed, which allowed me the rest and exercise that are often luxuries in our hectic schedules.
However, while I didn’t wind up with a worst-case scenario, I did indeed have swelling and pain, especially in my knees and hips, which were compensating for an increasingly heavy belly that threw off my body’s normal alignment. My symptoms were not on the level of a flare, but they were a challenge nonetheless. Perhaps in part because I didn’t complain all the time and in part because the people who love me want me to be pain-free, I was asked repeatedly during both pregnancies if I was in remission. Interestingly, the same people would ask me this question every few weeks, in spite of my telling them that I was not in remission. When people repeatedly assumed I was in remission, I felt that both the symptoms I was experiencing and the financial sacrifices I was making to work fewer hours were being ignored by loved ones. And while it’s not exactly logical, I felt like I was disappointing people. Everyone wanted me to be in remission, and many seemed to want to believe I was remission in spite of my words to the contrary, so I felt like I was letting everyone who had “remission expectations” down. I would have loved to have been able to give the happy news that everyone wanted, but unfortunately remission wasn’t my experience, and constantly being asked if I was in remission only served to hammer that reality home.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?