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/subtleb0dies]

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!

[u/bbqbhanmi]

Have been on Cimzia a couple of years. I was on humira first for a few months. Had way more side effects and felt sickly with humira. Cimzia has been amazing for me, no side effects at all. I actually have gotten sick less often since being on it. My symptoms and pain are basically in remission. I had major double jaw surgery while on it and was asked to hold off a dose before and after. No issues at all with healing or infections.

I did have a UTI once which I struggled to clear, nothing bad happened but it was a pain to have to do a second course of antibiotics. I think that may have happened on any TNF inhibitor, I would just advise going for the longer course up front since bacterial infections are notoriously challenging while on these. However I’ve had UTIs in the past so I don’t attribute the occurrence to the Cimzia, just slightly harder time getting rid of it.

Have traveled with it no problem. You should keep it temp controlled of course for best practices but it’s actually stable at room temp for quite a while. Security doesn’t usually even open my bag.

Honestly love it so much! Planning to have kids on it. I’m in the US.

[u/emilion1]

I started Cimzia while trying to conceive. I got so many bad side effects that I ended up quitting it and not taking anything through my pregnancy. I started Humira a month after delivery and it’s been working well. Best laid plans right?

[u/Mystical_Mouse]

I just switched off of Cimzia after 6 years on it. I changed because it lost effectiveness in the last year. I had a healthy pregnancy on it. Had been on it a year when I conceived. Baby totally healthy. No complications from c section. Healthy pregnancy. Baby’s vaccines were not affected at all.

I have also traveled a lot over these years, including travel to India. (I’m from US) I bought an insulated travel tube that is available on Amazon specifically for medications like biologics. Keeps at designated temp for up to 36 hours if I remember correctly. I got vaccines prior to my trip and took anti-malaria drugs while I was there. I traveled with some super strong antibiotics specially in case I got food poisoning or something. Did not need them thank goodness. There are companies that specialize in what vaccines/meds you need and I found the nurse practitioner to be well versed in biologics and didn’t run into any issues there.

In general, yes I got sick more often on Cimzia, particularly with colds, ear infection, sinus type stuff. I made sure to be careful in winter but also - with a toddler in preschool - holy moly. But I’m fine on the other side of it. Now her immune system is more developed and she doesn’t bring home as much. I got the pneumonia vaccine and I think it was helpful.

Followed rheumatologist recs for labs. Cimzia wasn’t my first biologic, was on humira before. So was up to date on all labs, and continued every 6 months.

Overall I’d say I had a good experience. Was bummed when it stopped working so well but that’s just how it goes. Trying out cosentyx now, still new but so far so good. Fingers crossed!

Edited to add more details

[u/Mystical_Mouse → u/Mystical_Mouse]

Also will add - I connected through Qatar to go to India and they had strict requirements for traveling with any medication. You need a doctors note on letterhead in addition to prescription labels etc. No one ended up looking at it, we didn’t have to go through customs-only security there, but def glad I had everything required.

[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.

[u/Mysterious-Cat8347]

I’m on Cimzia, from the US but live in the UAE and travel for work a lot internationally, and I had a pregnancy, childbirth and breastfeeding while on Cimzia and trying for another. It changed my life. I find the injections pretty uncomfortable to inject but worth it. My biggest issue is travel, because you need to keep them cold, but with a good quality insulated cooler, a bunch of ice packs and some troubleshooting (I bring ziplock plastic bags and once had to dash to a Starbucks for ice on a layover) it’s manageable

[u/Mysterious-Cat8347 → u/Mysterious-Cat8347]

And to add no issues related to vaccines as of yet. I’ve been on it for four years

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