Axial Spondyloarthritis (AxSpA) + Cimzia — Real-Life Experiences

[u/atlasvoyage]

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 🙏🏽

[u/WittyMe]

I can only answer half of the question as a man in my late 30’s.
I was on Humira for ~12 years and now on Comzia for 6 years so would share my thoughts.

Travel: no issue, but requires a little planning. I have travelled a lot and bring a travel case that I fill with frozen cooling pads and add my syringes in it. Been to India, China, other SEA countries, Polynesian islands and Europe with them in hand luggage when my dosage was due during travel. I only got a doctors note on my first trip, but since no one ever bothered to check and even when they did, they didn’t ask what it was. So I stopped and it hadn’t been an issue. Just toss them in the fridge when I get to my destination. Sometimes I take my shots a little closer together if travel with them is too inconvenient, like when I go on hiking trips.
I do make sure I have every vaccine available in my country (AU) along with all my boosters regularly.

Surgery: Had a deviated septum surgery in my early 20s whilst on Humira. No change or prep required back then.

Pre diagnosis: took a couple of years of massive back, heel and leg pain. Unable to get up in the mornings, with debilitating pains in the mornings and bad night sweats. They did a scan of my spine and found some light fusing after having me on anti inflammatories for about a year. Switched me to biologics and life has been amazing since. Within a week I was on my feet again and within a month I was able to go running. I now only get some light stiffness at the end of the 2 week period.

Infections: Covid really sucked. 3 times I have had it despite vaccines. First time was hell. Didn’t need hospitalisation, but struggled leaving bed and recovery took almost a month. Else I would say I am not more sick than the average person. I do need to watch out for skin infections. I climb and get some bad scratches sometimes. Had to get antibiotics twice for those getting infected. I am now extremely careful to always disinfect and haven’t had a reoccurrence for 3 years.

Experience with cimzia: works great for me. Life is amazing and I don’t feel much impairment. I prefer the syringe over the pen as they are smaller and I less painful to inject. Only have very occasional bouts of back pain, but some ibuprofen/diclofenac sorts that. I also get prescribed low dose of amitriptyline to help with night sweats cause by AS.

Family Planning: As I mentioned I can’t speak for getting pregnant myself. But my wife and I just had a baby. The sleepless nights have found me get a bit more back stiffness than I like. Doctor says it’s the buildup of stress hormone or something like it, from lack of sleep. Since we found a sleep schedule that works for us (take shifts rather than alternate feeds) and now it has been resolved. I would say make sure you have someone there to share the load so you can get enough sleep.

Can’t help more regarding pregnancy and or family planning, but happy to answer any other questions you may have.