How I Knew Humira Wasn’t For Me
I was on Humira for 6 and a half months. I knew I should give it around 6 months to be completely sure if it was working for me or not. Turns out, it isn’t the drug for me, and it took a trip out of the house to be 100% sure about that.
When I first started Humira I was hopeful. I’d heard so many good things about it, so I asked my rheumatologist to be put on it. I was previously on Inflectra (a Remicade biosimilar), but fatigue started to hit me and that’s when I decided that I wanted off of it. Little did I know the fatigue I’d experience on Humira would be a lot worse.
I did my first few injections and things were looking up. In May I was able to go for a bike ride and get up at a reasonable time one weekend. I took this as a good sign and remained hopeful. Those good days were few and far between.
During Humira treatment
Over the months, I started to realize that my pain was getting worse and so was my fatigue. I didn’t want to freak out, so I just kept a level head and told myself that sometimes these drugs take time.
Flare-ups were more often on Humira than when I was on Inflectra. I had more cane days than I’d had since before I was even diagnosed. My fatigue was another story.
I would be exhausted if I did anything remotely active. I could barely do yoga anymore and when I did, the next day I would be so fatigued that I could barely move. This is when I knew something wasn’t right.
What made me realize Humira wasn’t working
I decided to go downtown for a day with my friend. We walked quite a bit, but usually, when I go downtown I tend to walk more. When I was on Inflectra it allowed me to go on day trips and occasionally be more active, so I thought that maybe Humira would do the same for me. I was very wrong.
On the walk back to the car, the day started to really hit me. My feet were hurting, my back was hurting, and I was feeling the fatigue set in. I was wiped.
Once we got back into the car, everything hurt. I felt nauseous and exhausted, and I was in so much pain. When I got home I went immediately to bed and stayed there for the rest of the night.
Over the weekend is when it hit me. Humira was not working for me. My body was heavy and I was in a tremendous amount of pain. I needed my cane for 2 straight days, which isn’t like me.
It wasn’t until my mom made a comment about how I used to be able to do day trips that I noticed what was happening.
It’s incredibly disheartening to realize that a drug isn’t working for you. A lot of what people with chronic illnesses go through is trial and error, and this was a perfect example. I tried a drug, it wasn’t for me, and onto the next one, I guess.
How many drugs have you tried for your AS?
Do you use the word disability to describe your AS?