goodbye infliximab, hello adalimumab
Since September, my health has been declining again.
I had a flare up in my spondyloarthritis mostly, causing inflammation in specific joints, especially the sacroiliac joints, and parts of my upper spine that feel like a knife in my back whenever I breathe. I was able to keep it at bay with NSAIDs and, when very bad, short bursts of Prednisone (that I try to avoid) until further appointments and test results. I kept myself busy, I pushed through, I had stuff to do.
Still, I struggled a lot with intense pain and severe fatigue, and even had to lie down on the office floor at times while I was working because the pain was too bad to sit in my chair. Sometimes I had to ask my wife to come pick me up after work because I felt awful. I had pretty bad general pain (burning sensation) especially at night, causing lots of bad sleep, and also brain fog, issues with finding or remembering words.
The inflammation affects my cycle as well, and it rose back up to 75 days, when it used to finally be a healthy 28-30 days at the start of my infliximab journey. Now my ileocecal valve hurts a lot again (from my Crohn’s disease), my rashes are back, and I have more eye issues.
I had blood tests and an MRI recently, and while there are no infliximab antibodies and the levels in my blood are good, the MRI showed the inflammation, especially my ongoing sacroiliitis.
That means unfortunately, I have failed another medication, and there’s no lab result that can explain why or how. I have already failed shortterm steroids, budesonide, and azathioprine in 2024. I still have leukopenia and neutropenia from the azathioprine over a year later, which sucks. Infliximab helped for a while and finally made me experience what a healthy body feels like… I wish it would have lasted longer. I don’t want to run out of treatment options within 10 years.
For now, another TNF blocker until we exhausted those options.
It sucks. I have basically been crashing and rotting the past few weeks after such an eventful year. I feel like the life got sucked out of me. I have good days in-between that I try to use, but most really suck. I barely get to do anything I want or need to do. There’s so much I want to write about, so much I wanna read, I want to make more pixel art again and draw fanart and code stuff, and I want to continue building muscle and reach new fitness goals, and I need to continue my job search.
But I struggle hard and am mostly unable to do the things that make me happy. I sleep a lot, I lie around playing games, scrolling, chatting because that’s all I’m capable of most days. My mental health has been suffering, I’ve been moody and withdrawn, and I’ve struggled with suicidal thoughts. I don’t want to talk most of the time, I often hate to be touched, and I wish I wouldn’t have to be conscious. I had a good day recently where I made it to a café for a change, but it really exhausted me. Today my wife and I baked some cookies; she helps me a lot.
Hopefully, things will get better soon, as I get to start my new treatment tomorrow - two Hulio autopens back to back, urgh. It can take another 2-3 months to work, if it even does. I hope it does, because I don’t know how long I can last like this, and I have exams in March.
I’m really not in a Christmas mood this year at all.
Edit:
Fittingly, my wife just showed me this art by Tumblr user the-knife-consumer:
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