Imagine this. You hop into your cushy Remicade lounge chair, get strapped up to the drippy machine and get on with your morning - checking email, snacking on a tootsie-pop and waiting for that mousie to make you feel better. (At least that's how my infusions start - don't yours?)
Then, out of the blue your face turns red, and your stomach starts to feel green (no pun intended). The room starts to look like it's been designed by Dr. Seuss and then - best of all - Horton comes and sits his big elephant butt down on your lungs. (At least that's how my infusion reactions start - don't yours?) In short, you can't breathe.
The Remicade team I know and love is fabulous - I have never seen two nurses move as fast as mine did that day when I waved and hooted and tried to scare the Grinch away. They shut my IV off, doped me up with Claritin, added a saline bag and hovered. And we waited.
This was last December. Like most reactions, mine went away within a few minutes, leaving me breathless and insecure.
I've come to rely on Remicade to work it's magic on my Psoriatic Arthritis. 2.5 hours in a chair with a movie, and I felt like gold for 5 weeks. My denial about the power of this drug has gone hand in hand with my denial about being sick at all. Fab Rheumy has been telling me not to play with fire - that I need to take this drug seriously. But I felt too good to be serious. Lalala and all that.
Apparently in clinical trials, 20% of people had an infusion reaction to Remicade, as opposed to 10% with a placebo. I could not find the study backing this data up - but the link made me sit up in my chair. Nearly as scary - a recent single center study of people on Remicade (for Crohn's) showed that 15% had serious infusion "events". That's a good enough number for me.
(an aside - I like the word "event". I certainly had the attention of the entire Remicade room for a morning - I felt like a bride).
I successfully had my infusion, and had one more infusion in January that went swimmingly. But it's hard to sit there to get doped up in order to trick your body into accepting a high powered drug. Every time I've thought about what I was doing to myself, it just felt... bad. My body is saying no for a reason, right? Why did I keep trying to force the stuff in? I guess because I like feeling better.
Long story short - a few weeks ago I got a visit from that damned blue elephant again, and we had to shut 'er down. And now I'm off Remicade.
(By now I know many of you don't care about my reactions - all you want to know about is my super duper Italian car! Ok. I'll tell you about it.)
Right about the time my doctor and I decided to take me off of Remicade, I saw this article. In it, Dr. Francisco Kerdel (a dermatologist from the University of Miami) is quoted as saying that inflixumab is a Ferrari. He warns other physicians:
"This is a high-performance vehicle, but you need to know what you’re doing... keep safety in mind from the start."Then, Dr. Kerdel dragged me down to the used car lot, and showed me a car I might like better. Enbrel, the station wagon of biologics.
"Etanercept is like a Volvo. It’s not a fast car, it’s not a flashy car, but it’s a good, solid car that will probably work for you."This metaphor, goofy as it is, was another reminder to me that I can take none of these drugs for granted. None of us can. Who ever thought putting boiled up mousie bits into our bodies was smart? It works... a lot of the time. And that is glorious. But what else can and does it do? I don't think anyone knows.
Sometimes I think I see Horton, off in the distance, driving his Ferrari into the sunset. I kind of want him to come back. I'm anxious about starting a new drug, especially after my experiences with Leflunomide and Remicade. Better the devil you know - right? Or no devil at all. But I can't imagine life without a biologic.
A sad state of affairs. Sounds like time for a new car. I guess this time it's a Volvo.