Biologic frustrations

This is kind of a rant/ vent to people that will understand what I'm dealing with.

I've had my NRAXSPA diagnosis for a few years now and I think I've officially moved into actual AS, based on my last MRI. I was first on Enbrel, then Humira and now just changed to Cimzia. I think my doctor switched me because I've had sacroilitis for over 1.5 years now, according to my imaging. I definitely noticed a difference on Humira and when I had to stop for multiple surgeries last year, I was miserable without it.

I get my third loading dose of Cimzia this coming week and it feels like I'm not on any biologic. I'm miserable. I'm also salty that it doesn't come in an auto injector. I could do my Humira myself because I couldn't see the needle in the auto injector, but trying to jab myself with the prefilled Cimzia syringe was a bad time. So now I have to drive to my rheumatologist's office every other week to have a nurse inject it for me, which is a huge hassle and frustrating.

I know it's so early to hate Cimzia, but I can't imagine when I go down to 1 injection vs the 2 at a time for the loading dose, that it'll help me feel any better. The 2 injections at a time isn't doing jack for me, so how is 1 injection going to help at all? I can't be this miserable for months, hoping it finally starts working.

I messaged my rheum today and asked his thoughts and told him I don't want to be miserable for months on Cimzia and hope it eventually works but I trust him entirely and I'll stick it out for a bit if he asks me to. I kind of want to try Humira weekly vs bi weekly or an infusion. I have a port and do daily IV saline through it and am at the infusion center once a week for a port needle change, so getting an infusion would be easy peasy, but I don't know the pros and cons of it vs an injection. Most of my doctors, including my neuroGI, also suspect I have small bowel Crohn's, but due to a compression in my duodenum, we haven't been able to see much of my small bowel to confirm it, so we're just making sure whatever biologic I'm on for AS, also treats Crohn's.

I just want my auto injectors back and to actually get any pain and fatigue relief from my biologic again. I'm so frustrated having switched meds, and wish I could at least just go back to Humira. (I get another biologic, Xolair, from Accredo as well and when we switched the Humira to Cimzia, they cancelled my Xolair as well and it was a nightmare to get it reinstated, so I'm not looking forward to that mess happening again if we switch again.) Ugh, just ugh.

Posted May 11, 2025, 4:51 PM UTC

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