AS Pregnancy, the Never-Ending Flare, and Being a Medical Unicorn

Editor's note: Read part 1 of Erin's journey here.

They say that the second trimester is supposed to be the easiest and most enjoyable part of pregnancy. For me, the second trimester was one giant ankylosing spondylitis flare that seemed like it was never going to end.

I had been off my medication for 3 months, but I was optimistic that my ankylosing spondylitis symptoms would stay in remission as they do for many women during pregnancy. I began experiencing severe pain in my hips and wasn’t sure if this was normal pregnancy pains or an ankylosing spondylitis flare-up. Over the following few weeks, I reached out to my obstetrician’s office on 6 different occasions looking for guidance. Each request became more and more desperate for relief.

Ankylosing spondylitis or pregnancy pain?

They kept telling me I should try taking some Tylenol and sleeping with a pillow between my knees. If those didn't help, I should seek out physical therapy. I tried Tylenol, and it didn’t touch the pain. I slept with a pillow between my knees every night, but my hips still throbbed and ached. Eventually, I went to see a physical therapist who gave me exercises to try, but the pain persisted.

Every time I called my OB's office, I got a different nurse who gave me the same advice. I was getting incredibly frustrated that no one seemed to be relaying my messages to my doctor or taking my underlying medical condition into consideration.

I finally got an appointment with my doctor, who gave me a few more suggestions. However, I still didn’t feel like anyone was considering the potential crossover between pregnancy and ankylosing spondylitis symptoms. If it was, it was evident that there was no easy protocol for how to handle it.

I asked my rheumatologist for help

I’m not sure why it took me so long, but after a few weeks of sleepless nights and consistently waking up with the notorious lower back pain that AS causes, I reached out to my rheumatologist. I was skeptical that he could help. Basically, all of my care had been turned over to my OB during my pregnancy, but I was desperate. I was pleasantly surprised when he quickly responded and asked me to come see him a few days later!

I have always loved my rheumatologist and have been incredibly thankful to have found him. My next visit only magnified those feelings because I could sense his immediate concern and desire to help me. He told me that he agreed with me, that what I was experiencing was definitely an ankylosing spondylitis flare-up and not just normal pregnancy pains. I finally felt heard.

The doctor acknowledged that I should not be dealing with this much pain on top of the normal pregnancy symptoms. He was determined to figure out a way to help me feel better. He admitted his lack of knowledge about pregnancy but was willing to learn so that I would be cared for.

We quickly came up with 3 potential plans. He stepped out to make some phone calls to help determine the feasibility of each. Only 2 ended up being viable options. As I was leaving his office, he called my OB to discuss which one would be best from both their perspectives.

I was feeling ecstatic

I was still in pain, but the potential of relief was enough to boost my spirits. Now, I just had to wait for the 2 doctors to collaborate and come up with the safest plan for me and the baby.

Not surprisingly, this collaboration didn’t happen quickly. I felt like the middleman getting phone calls from both offices asking, “Will you call the other doctor and ask them to call us back, please?”. You would think that communication between specialties would be easy and efficient, but the almost non-existent crossover between OB and rheumatology made it more difficult. Finally, after almost two weeks of waiting, we had a plan.

Starting injections while pregnant

I had stopped taking my biologic medication at the beginning of pregnancy, but by the time I reached my third trimester, the original concerns that led to that decision were no longer relevant. My doctors decided that the best course of action would be for me to start injections again. We also decided I would switch to a different medication that didn’t linger in my system for as long. I would stop taking it 2 weeks before my due date, allowing the medicine to clear both my and the baby’s system before she was born.

One week after we made that decision, I was able to start medication. My rheumatologist asked his office to rush the paperwork and documentation for insurance approval so that I could order doses as soon as possible. Miraculously, everything went smoothly. The medication surprisingly relieved my AS symptoms within the first week I started it! I was as uncomfortable as any other woman in their third trimester of pregnancy, but finally didn’t feel like I was being absolutely demolished by an ankylosing spondylitis flare-up as well.

The power of self-advocacy

My ankylosing spondylitis did not behave as I expected it to during my pregnancy. Although, I’m not sure why I had any expectations for such an unpredictable disease. I felt stuck many times, convinced I couldn’t possibly endure 40 weeks of pain. At the very beginning of my chronic illness journey, it took years of disappointing doctors' appointments before I began to advocate for myself. I am proud to say that within the last few months, I was able to do exactly that and eventually find some comfort.

Ankylosing spondylitis is common in women. Pregnancy pain is common in women. So why does having active AS and being pregnant make me such a unicorn? The intersection of these medical fields is minimal, but this experience has shown me that I can push those bounds and force them to merge. When they finally did, I found relief.

I know that many women with AS have major flares during the two months following delivery. Even though the possibility makes me anxious, I feel empowered to get through it—just like I did during the 9 months before.

What was your experience being pregnant with ankylosing spondylitis? Did you experience any abnormal pregnancy pains or extreme flare-ups?