So, I went today to try Remicade again. I have three fistulas that have developed over the past couple of months and I was told that Remicade is really the best option for me. I tried it last year but had a reaction on my third infusion (which totally sucked because it was working really well).
The doc told me that it's possible that I reacted because of no pre-meds and said that they might help me to tolerate it better. So I went on 6MP, took four days of prednisone and and antihistamine and tylenol with the hopes of making it work.
No luck. I lasted about
30 minutes before I started to feel all hot and my chest got tight. I called in the nurses and when they told the doctor he said no more.
I'm so disappointed. He's putting in the order for Cimzia because the Humira didn't work. I so afraid that I'll just have to suffer if the Cimzia doesn't work either. These fistulas are awful-- two of them are close to my vulva so I cannot urinate without intense pain. This just plain sucks.
I really wish I could just have surgery and an ostomy, the disease is only in my rectum- I don't actually need that do I?
Laurenne, 24 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002
On: Started LDN about
a month ago, Zoloft, Lialda and Imodium
Post Edited (not creative) : 4/7/2009 9:20:38 PM (GMT-6)