For those of you not following along, On 12.5.22 I got a new infusion medication to treat my ulcerative colitis. It was supposed to put my colitis into remission and keep it there. Most people have no issues with the treatment. I, am not most people. According to the drug’s website, delayed reactions can occur up to 12 days later. My reaction decided to come on day 8.
On Tuesday afternoon, I started to feel achy in my arms. I instantly assumed it was the flu going around. I had been to a signing the weekend prior, and while I wore a mask, (because I’m immunocompromised) I assumed some germs snuck through. I made myself some soup, took some Tylenol, and went to bed early trying to sleep it off.
That night I was miserable. Everything hurt. I got up to pee during the night and because the pain was so much, I passed out and woke up on the floor sometime later. I now have a lovely bruise on my forehead to remind me of that. By Wednesday morning, I couldn’t move my arms. Like, at all. It hurt so bad. I felt so achy and heavy and I had no grip strength. The rest of my joints/muscles weren’t feeling so hot either. Even eating hurt. If it moved on my body, it hurt. After comparing symptoms of the flu/Covid AND allergic reactions to Inflectra, I determined it was likely a reaction to the latter. I reached out to my GI doc but got no reply after several messages.
I attempted to log into work hoping if I just sat and typed I’d be okay. I was not. Everything hurt. I couldn’t get off the couch, I couldn’t put my hair up, and I couldn’t do anything without pain. Not great. I messaged my son to see if he could get out of school to come to help me. He did, took one look at me, and said, “I can either call an ambulance or I’m driving you, but you’re going to the ER.” Meany. But he had a point. I couldn’t move. Probably not a good thing. So, with much time and pain, he got me into his car, and even got me a wheelchair and help get me all signed in. He sat with me in the ER room for HOURS, tending to my every need. Scratching my forehead, helping me sip on Ginger Ale, and escorting me to the bathroom so I wouldn’t fall. He’s a good kid.
My son used my jacket as a blanket as they never provided me one. They wanted me to get into a johnny, and I was like, dude, not gonna happen. I. CAN’T MOVE. At first, they assumed I had the flu. Dude, I’m telling you, this isn’t the flu. I’ve had the flu. A lot. This is not that, but I understand they have to rule it out. They ran tests for both strains and for Covid. Negative. That’s when they started to move a little faster (as fast as one can in the ER.)
After six hours in the ER, and 8 vials of blood were taken (with 5 pokes cause my veins aren’t great) they determined that it probably likey was an allergic reaction. My immune makers were spiked. My body was angry with me. They gave me oxi for the pain, but it didn’t touch it. Then, they switched me over to some prednisone to help with the inflammation and said within a few days, I should see movement in my body again and follow up with my GI doc. Ya think?
My son is taking the day off from school to fill my prescription for me since I can’t lift my hands up that high to drive, and to help me as needed, but already I can tell it’s working. While I’m not 100% yet, I am maybe 30%. Which is a big improvement when you couldn’t move at all without pain. There is SOME range of motion now. Enough to type without severe pain. I can open the refrigerator if I use both hands. I still can’t lift my hands over my chest and my grip strength is still shotty, but I can at least slowly waddle off the couch now. It just takes several minutes.
I have prods all over my body where they checked my heart that I don’t have the strength to pull off yet, but hopefully soon. And maybe a shower tomorrow when I can lift my leg to get inside and maybe wash my hair if my arms work! Wouldn’t that be a treat!
What does this mean for my Ulcerative Colitis treatment? I’m not sure, the saga to get me into remission continues. But one thing I DO know, I’m not showing up to my next infusion treatment on Monday. No thank you.
I’ll do my best to keep you posted. Until next time,