Stopping and Starting Humira
I recently went through a painful experience.
I woke up one morning in incredible pain; my neck was almost locked up, I couldn't move my hand, and I felt just exhausted — even after getting a full night of sleep. I know that the reason for this was that I was not taking my Humira as consistently as I had before.
Difficulty getting a rheumatologist appointment
To note, this was done in coordination with my rheumatologist, not on my own volition. With this incredible pain, I had to call my rheumatologist, inform them of the pain I was experiencing, and request an immediate appointment so that I could get a steroid pack and change my medication schedule because I was in too much pain.
One thing to recognize is how hard it can actually be to get an appointment at the rheumatologist. Sometimes, especially with first appointments, it can take up to 6 months to get an appointment, so it was extremely lucky for me to get an appointment right when I needed it; someone had to have cancelled in order for me to get that appointment.
Going back on Humira
At the appointment, my rheumatologist examined my joints. He was surprised at how tender they were, and he noted that he could feel the pain I was in. Not only that, but he also confirmed how much inflammation was present in my neck and shoulders.
Thankfully, I was able to get a steroid pack, but I also had to request going back on Humira. This was more of an ordeal than I realized.
Because I had officially been taken off of Humira — I requested this because I felt that it was causing me weight gain — I had to have the Rx reinstated, which involved getting insurance approval again, working with the specialty pharmacy, and other amounts of paperwork. Not only that, but I had to undergo more testing to ensure that I did not have TB and that my condition was still necessitating being on Humira.
This or That
Did you know Humira released new biosimilars for RA treatment in 2023?
Mixed feelings about restarting Humira
Well, the bloodwork came back and confirmed that, indeed, I have RA and my inflammation was bad enough to necessitate Humira. What's interesting is that this inspired somewhat contradictory feelings in me.
In some cases, I felt relieved that I was able to get back on the medication that helped me with my condition; in another vein, I felt completely locked in by my medication. I had questions like, "Am I going to have to be on this forever?" and "Will I always go through cycles of pain like this?" I felt defeated at the same time that I felt some relief — physically, though, not mentally.
The emotional turmoil of pain cycles
This has been a recurring theme for me in having RA. I feel like I have to consistently negotiate between physical and emotional pain.
A perfect example of this is that after I started taking my Humira again for a few weeks, I felt immensely better: my neck felt so much better and my joints have loosened up. But I'm still dealing with the emotional turmoil of having experienced this pain.
I know that my medication helps, but the literal bodily trauma never leaves.
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