AS Pregnancy, the Never-Ending Flare, and Being a Medical Unicorn
Last updated: March 2022
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 honestly one giant ankylosing spondylitis flare that seemed like it was never going to end.
I had been off of my medication for three months, but was optimistic that my AS 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 AS related. Over the following few weeks I reached out to my obstetrician’s office on six different occasions looking for guidance- each request becoming more and more desperate for relief.
I was continuously told that I should try taking some Tylenol, sleep with a pillow between my knees, and seek out physical therapy if those didn’t help. 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 OBs office I got a different nurse who gave me that same advice, and I was getting incredibly frustrated that no one seemed to be relaying my messages to my doctor, or taking into consideration my underlying medical condition. I finally got an appointment with my doctor, who gave me a few more suggestions, but I didn’t feel like the potential crossover between pregnancy symptoms and ankylosing spondylitis symptoms was being considered at all. If it was, it was evident that there was no easy protocol for how to handle it.
I asked my rheum for help, instead of my OB
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 would be able to help (basically all of my care had been turned over to my OB for the duration of 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 been incredibly thankful to have found him, and my next visit only magnified those feelings. I could sense his immediate concern and desire to help me. He told me that he agreed with me and what I was experiencing was definitely AS related 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, and that he was determined to figure out a way to help me feel better. He admitted his lack of knowledge relating to pregnancy and the baby, but showed a willingness to learn and collaborate to make sure I was taken care of. We quickly came up with three potential plans, and he stepped out to make some phone calls to help determine the feasibility of each. Only two ended up being viable options, and I left his office as he was calling my OB to discuss which would be best from both of 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 two doctors to collaborate with each other and come up with a plan that was safest for me and the baby.
Not surprisingly this collaboration didn’t happen quickly. I felt like the middle man 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 proved to make it more difficult. Finally, after almost two weeks of waiting, we had a plan.
Starting injections again
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. It was 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, and would stop taking it two weeks before my due date- allowing the medicine to clear both mine and the baby’s system before she was born.
One week after the decision was made I was able to start medication. My rheumatologist asked his office to rush the paperwork and documentation for insurance approval so I could order doses as soon as possible, and (miraculously) everything went smoothly. Within a week of starting the medication I was shockingly surprised to start feeling AS symptom relief! 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 autoimmune symptoms as well.
AS did not behave how I expected it to during my pregnancy (although I’m not sure why I had any expectations for such an unpredictable disease), and there were many moments where I was stuck feeling like I couldn’t possibly endure 40 weeks of the pain. At the very beginning of my chronic illness journey it took years of disappointing doctors appointments before I began to advocate for myself, and I am proud to say that within the last few months I was able to do exactly that and eventually find some comfort.
AS is common in women. Pregnancy 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- and when they finally did, I found relief.
I know that many women with AS have major flares during the two months following delivery. While I’m anxious about the possibility, I feel empowered to get through it, just like I did the nine months before.
Have you ever had to take a leave of absence from work due to your symptoms?
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