What I Learned Planning a Family While Living with Rheumatoid Arthritis

RA can be an important factor when deciding to have children. But it was an experience that I shouldn’t have faced so alone.

When I was diagnosed with rheumatoid arthritis (RA) at the age of 10, having a family was far from my mind.

Many of my childhood doctors would mention in passing that living with RA could make having children difficult or take years of planning. They would mainly say this to my parents, and I never knew what they really meant.

At the time, all that mattered was treating the disease and trying to have a healthy and happy childhood.

I still had hopes that I would grow out of my juvenile RA, so I didn’t pay much attention to any of this information.

When I was 17 years old, my prayers seemed to be answered and I went into sudden remission from RA. I had no symptoms for over a year. But then, during my first semester of college, the RA came back in all the same joints.

Just a few years later, I got married. I started thinking about past comments my doctors had made. I realized that it was time to consider how my RA might affect any plans for having children.

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Understanding my RA

In my early 20s, my doctor recommended I get my RA under control before trying to have children. He explained that if I were managing my symptoms well, trying to have children would seem less stressful.

My husband and I didn’t plan on having kids for a few years, so I decided to focus on getting back to my normal life. I was still struggling with the flare after being in remission at 17.

I started my first biologic at the time, Enbrel, along with methotrexate. After a few months of this treatment plan, I began having relief.

I was on Enbrel for several months, but it stopped working. My doctor switched me to Humira, which didn’t help, then finally I tried Simponi. I continued taking methotrexate tablets with Simponi injections. My doctor explained that methotrexate can cause birth defects, so I also took birth control.

This combination seemed to do the trick, and by the age of 23, I was managing my symptoms well.

About a year later, my husband left the Marine Corps, and we moved across the country back to Texas. With him getting out of the military and our medical insurance changing, I found out the Simponi was no longer covered by my insurance. I also went through months of trying to find a rheumatologist. It was a mess, and I started experiencing another arthritic flare.

My doctor finally put me on weekly methotrexate injections since my insurance did not approve any of the biologics, which eventually controlled my flare and reduced my symptoms.

Deciding to start a family, and what it meant for my RA

When my husband finally got settled into his new career, we decided to start planning a family. At this time, I was still taking methotrexate injections each week, and birth control pills every day. Because of this, I knew my RA treatment had to change to be able to conceive.

I went to my rheumatologist first to understand how and when my treatments needed to change.

She told me I needed to stop the methotrexate injections for 3 months before stopping the birth control.

I did not have a very involved doctor at this point, so communication was difficult. Looking back, I wish I had asked more questions about medication options while trying to get pregnant or what might happen if I started having a bad flare during this process.

She didn’t give this information, and I never asked. Instead, I was just told to stop my medication, and no alternatives were mentioned. So, I went into the whole experience a little blindly.

I also focused on healthy eating and eliminating foods that bothered my joints. For me, this meant no sugar, reducing intake of any processed foods, and keeping my meals simple. I tried to exercise each day and minimize my stress.

Despite making a clear decision to have a family, I often felt a little lost. I wasn’t sure how to navigate my RA in this process or the right questions to ask. At the time, I definitely felt that trying to conceive was incompatible with treating my RA with medication.

Not knowing I had options

I was off birth control for a month before we started to try for a baby. About 6 months into trying, I started dealing with an arthritic flare. My joints were swollen and painful, and I was experiencing fatigue.

I scheduled an appointment with my rheumatologist to see if I had any options.

This hadn’t mattered until it was almost too late — I was in the middle of a flare, off all medication, trying for a baby, and wanted to fix a quick appointment with a rheumatologist that I barely knew.

At the appointment, my doctor told me I could take Actemra which was safe for those who were trying to conceive. Thankfully, my insurance approved this injection quickly, and I was able to start it a few weeks later.

I took the Actemra for the next few months until we finally found out I was pregnant.

Actemra is not recommended to be taken during pregnancy, so I stopped once I knew I was pregnant. Pregnancy was definitely a difficult time for me which you can read about here.

Looking back on my family planning experience

My family planning experience was thwarted by changing doctors and insurance, a lack of knowledge, and a bit of naivety. In some ways my naivety was good — it often meant that I didn’t feel overwhelmed — but in the end it left me navigating the experience alone, not knowing what options I had.

I had heard mutterings of how my RA might affect my chances of having children since the time I was a child myself. This meant that I assumed many things without getting updated medical knowledge or fully understanding my RA.

I wish I would have had a better relationship with my rheumatologist. I wish I would have asked more questions.

Part of this was due to me not knowing what to expect. Another part was not having a rheumatologist that wanted to be involved.

I changed doctors after my daughter was born, and it has made a world of difference. Communication with your doctor is so important for RA, whether wanting a family or not.

Having a family has been a blessing, and while RA can be one extra thing to consider, the whole process has forced me to take charge of my life with RA.

You can have a family with RA; it just might take a little more time and preparation.