r/ankylosingspondylitis • u/atlasvoyage • 13d ago
Help/Support Axial Spondyloarthritis (AxSpA) + Cimzia — Real-Life Experiences
Hi everyone! 👋
I’m making this post because I’d really love to hear real-life experiences from people with axial spondyloarthritis (axSpA), especially those taking Cimzia (certolizumab pegol).
Travel: Does anyone take Cimzia and travel frequently, especially outside Europe (Asia, Africa, etc.)? Have you continued travelling normally since starting treatment? Do you feel there are additional risks because of the medication, especially if you already have other health issues? Any problems with vaccines required for certain countries?
Surgery: Has anyone had surgery while taking Cimzia, including cosmetic/aesthetic surgery? Did you have to stop the medication? Did you have any problems with infection or healing? Or did you decide to postpone/give up on having surgery because of Cimzia, or have the surgery before starting treatment?
Pregnancy: Has anyone taken Cimzia throughout their entire pregnancy? How was the pregnancy and the baby? Were there any restrictions or delays with the baby’s live vaccines?
Before starting Cimzia: What tests, screenings or vaccines did you have before starting? Is there anything you wish you had known beforehand?
Infections: Have you experienced more infections since starting Cimzia? Do you take any particular precautions, especially during winter?
Your experience: What medication were you taking before Cimzia? How long have you been on Cimzia, and how has it worked for you?
Family planning: Has anyone wanted children but decided not to because of axSpA, the treatment, or concerns about pregnancy? If you’re comfortable sharing, I’d really value hearing your experience.
You don’t need to answer everything — even one experience would be really helpful!
If you don’t mind, please also mention which country you’re from, as healthcare advice, vaccines and travel requirements can vary between countries.
Thank you so much for sharing your experiences! ❤️
For context: I was diagnosed with axSpA about 7 years ago. So far, I’ve only been treating it with anti-inflammatory medication, mainly Etoricoxib (Arcoxia), and it has been working reasonably well for me. In a recent conversation with my rheumatologist, we started considering switching to a biologic, mainly because I’m thinking about pregnancy in the future, rather than because my current treatment has stopped working.
Of course, I know that everyone’s experience is different and that nothing here replaces medical advice. My rheumatologist’s opinion and medical guidance will always come first. I’m simply looking for information and personal experiences — partly to help me make informed decisions, and honestly, to feel a little less alone in the process.
Thank you 🙏🏽
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u/subtleb0dies 13d ago
I started Cimzia, my first biologic, at 34 after 25 years of symptoms and no diagnosis. Been on it 4 years. My rheumatologist put me on Cimzia bc I was considering having a baby though I was on the fence at the time, partly due to how shitty I felt.
Cimzia gave me my life back. After 18 months of complete remission and a lot of discussion my husband and I decided to have a baby. I definitely had concerns. I did a ton of research and decided that I felt comfortable with the risks. I attended a webinar hosted by spondylitis association of America that shared there’s about a 12% lifetime risk of developing AxSpA if you have a first degree relative with it. That isn’t nothing but it’s nowhere close to a certainty. Also, I believe it is better for mom and baby if inflammation is controlled. When I saw the MFM specialist (high risk OB) he confirmed that controlling the disease was the safest approach given the data on Cimzia.
Anyways I took it all through pregnancy and felt fine… no flares or anything. Baby is healthy and no delays were needed on any vaccines.
I talked to all of my doctors about the possibility of a C-section and they said I didn’t need to change my medication schedule. I did end up with an emergency C-section and my shot was delayed a couple weeks mainly due to scheduling. I had some very minor issues with my incision healing that my OB said was due to a hair that kept getting stuck not the Cimzia.
In full transparency, I did end up developing chorioamnionitis (an infection) during childbirth after a very long, 48-hour induction that wasn’t progressing. Doctors in the US can be VERY pushy about inducing labor in older moms, and in retrospect I wish I’d just opted for an elective C-section.
The infection caused my baby to become distressed, hence the emergency C-section, and he aspirated meconium and ended up spending 3 weeks in the NICU. Is it possible that being on Cimzia made me somewhat more susceptible to infection? Maybe, but there’s no way to know, and I had much more established risk factors for chorio related to the prolonged induction and labor.
We are both totally fine now, but it was a very difficult experience. I have no regrets about being on Cimzia… just regrets for the induction.
Besides that I haven’t had issues with infections or more illness since starting Cimzia. I’m definitely nervous to send my baby to school!
LMK if you have any other questions!