My Experience Getting Infliximab Infusions
Last updated: November 2023
I get inflixmab infusions (under the brand name Inflectra) every four weeks. Inflectra is a biosimilar of Remicade. 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. Inflectra is the first and only biologic I’ve been on. I started getting it during the summer of 2020.
Adjusting doses and the waiting game
For two and a half years, my rheumatologist adjusted the frequency and doses of the medication to try and bring my 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.
Now I look forward to getting my monthly 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 possible, I plan responsibilities and activities that are time consuming and require more energy during this week. During this week I keep my mobility aids close by but don’t use them often.
I still feel good during the second and third weeks after my infusion
I get a bit more tired and need to rest more. I also use my mobility aids about ½ the time. And 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 pain starts worsening and I know I need another 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.
I am so thankful to get these infusions
Part of me wishes the right dose and frequency for me could’ve been figured out earlier so I didn’t suffer and struggle for two and a half years. But I understand that medication affects everyone differently and 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, 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 biologic, axSpa and I can coexist peacefully and contentedly. I hope it continues working.
Do you notice worsening flares in colder weather?