My Journey with Infliximab Infusions for Ankylosing Spondylitis

I get infliximab infusions (under the brand name Inflectra) for my AxSpa every four weeks. Inflectra is a biosimilar of Remicade. This is the first and only biologic I’ve been on, and I started getting it during the summer of 2020.

Adjusting doses and the waiting game

I get 6 vials of 100mg infused and have been at this dose since August 2022. According to my rheumatologist, this is the typical dose for people with IBD.

For two and a half years, my rheumatologist adjusted the frequency and doses of the medication to try and bring me pain relief. With each adjustment, I experienced mild pain relief for a few months before it stopped making a difference.

However, since the adjustment last summer, my AxSpa has finally become more stable. I still experience AxSpa symptoms like pain in my lower back and sacroiliac joints, fatigue, and brain fog, but they are significantly reduced.

I am not constantly flaring up anymore. This means that I have a baseline for my pain now, and it is a lot more predictable and thus easier to manage.

My monthly infliximab infusion cycle for AxSpa

Now, I look forward to getting my monthly infliximab infusion. I feel the most symptom relief in the week following my infusion. That is when I have the most energy and am in the least pain. It is when I am my most functional and productive.

When I can, I plan responsibilities and activities that are time consuming and require more energy during this week. I also keep my mobility aids close by but don’t need to use them often.

During the second and third weeks after my infusion, I still feel good, but I get a bit more tired and need to rest more. I use my mobility aids about half the time. I also experience more muscle aches and start feeling the early pangs of the familiar deep seated pain in my lower back and SI joints.

By the fourth week, the AxSpa pain starts worsening, and I know I need another infliximab infusion. Usually by the day of my infusion appointment, I am in a lot of pain and rely heavily on my mobility aids 100% of the time.

Thankful to get these infusions

Part of me wishes I could have figured out the right dose and frequency earlier so I didn’t suffer and struggle for two and a half years. But I understand that medication affects everyone differently. What may work for one person might not work for another. It just took a while for my doctor and I to figure it out, and that’s okay.

I finally feel like myself again after two and a half years. I am still unable to work a full-time job, but I am no longer bed-bound, which is something I’m so grateful for.

My life looks different from before I got sick. It also looks different from what I had imagined my early twenties would be like. But this is the best I’ve felt in years. Thanks to my infliximab infusions, axSpa and I can coexist peacefully and contentedly. I hope it continues working.