I'm in the trial now. I just had my second infusion last monday and my third is scheduled for Tues and the last one the following Monday. I researched everything I could prior to entering the study, asked every question I could think of. The easiest question I felt they could answer was "How long has anyone stayed in remission following the four infusions". I asked all doctors assigned to me in the study and the response was, "we're still evaluating the data". Well, during my infusion Monday I said "I can't believe I could live without thinking about
Crohn;'s every day". they said at that point, "oh no, this isn't a cure, at best this might be a monthly infusion for the rest of your life, it's several years away from being put before the FDA". So, after a cat scan, the most horrible colonoscopy of my life following an upper endoscopy with 50 biopsies in total, I was in a fetal position on the floor of my hotel. It took four days for the air to begin to pass...horrible pain. The dr couldn't find the end of my colon during the colonoscopy and ended up 20 cm in my ileum. Now they finally tell me that they are hoping for pain relief for one month! They have applied for "compansionate care" thru the drug companies before during studies, but I was told that it was never granted due to the liability. I'm suppose to have another colonoscopy on March 9 with 30 biopsies...no way. If there's no hope of long term remission, I'm done. I can't wait 3-5 years for this to POSSIBLY be on the market. It's just not a fair trade off. I'm a lab rat, a walking specimen.