Background/Purpose: At the age of 26, the same month I got married, I was diagnosed with Takayasu Arteritis following severe chest and back pain. Hypertension was added to my condition two years later. My treatment varied but included deltacortril, PULSE, methotrexate, infliximab, and tocilizumab. As a result, I had to avoid pregnancy from the beginning of my marriage. Four years after the diagnosis, I experienced pregnant unexpectedly while using tocilizumab. What should have been joyful news became a source of fear and uncertainty for us. After my rheumatologist explained the risks, we decided to continue the pregnancy at 10 weeks. However, at the first perinatologist visit, anomaly was suspected, followed by a trisomy 21 diagnosis, and the pregnancy was terminated at week 16. Five months later, I had a planned pregnancy that ended in miscarriage due to an ectopic pregnancy. Both pregnancies ended in loss. I experienced bleeding, and curettage was done without any anesthesia, increasing my fear of gynecology clinics. After these experiences, my husband and I silently closed the door on having children.

Intervention: During the COVID-19 pandemic, I couldn’t access tocilizumab for six months. At the check-up six months later, my doctor  informed me that my condition was stable enough to go without medication for a period and try for a baby. A month later, I went to the ER with severe groin pain and learned I was pregnant again. What followed were weeks filled with fear: suspicions of ectopic pregnancy, then heterotopic pregnancy, and bleeding. I found myself once again face-to-face with the very fears I had hoped to avoid. Until I found my perinatologist.

Maintenance: I had check-ups every three weeks in the first two trimesters, and every two weeks in the third. The communication and coordination between my rheumatologist and perinatologist were crucial components of my pregnancy care. My anxiety decreased thanks to my doctor’s clear, calming communication without overemphasizing risks. Working from home due to the pandemic also reduced physical stress and allowed me to have a rest-focused, and calm pregnancy. My third pregnancy ended happily with the birth of a healthy baby girl in the 41st week.

Quality of Life: The key to a healthy pregnancy and baby was my rheumatologist’s accurate evaluation of my condition and reassurance that my health was suitable for pregnancy. The patient’s trust that the doctor will make the best decision for her makes it easier to make difficult decisions and accept negativities during the process. At this point, clinical expertise alone is not enough. The physician’s communication, long-term follow-up, and interdisciplinary coordination are all crucial for the patient’s acceptance of the disease, adherence to treatment, and overall adjustment. In addition to the professionalism of my doctors, their coordination, patient communication and the decrease in my daily stress level increased my quality of life during pregnancy and allowed me to have a healthy pregnancy and birth without complications at age 34.

Takeaway:

Effective communication and a trusting doctor–patient relationship improve patient adherence and emotional resilience.

Interdisciplinary coordination is essential, especially in pregnancies complicated by rheumatologic disease.

A personalized approach that considers the patient’s life circumstances enhances treatment success.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/my-journey-of-risk-loss-and-hope-the-role-of-multidisciplinary-collaboration-in-managing-pregnancy-with-takayasu-arteritis/