Thanks, everyone, for your responses. I appreciate them!
Winter, did you try other drugs before Remicade, or were you put on it immediately?
Judy2, thanks for the link - I'm going to look at it right away. :)
Supa, thank you! A lot of planning still needs to be done, but we are excited. about Remicade, do you mean that if I went through with the trial I wouldn't be able to have it anymore (assuming it becomes approved) because of antibodies my body will create? I am asking because if I go through with the trial there will likely be a large gap between the end of the trial and the time it was approved (if it is approved at all).
Subdued, I forgot to mention that I am also anemic (iron-deficiency anemia) but that didn't shock or bother me much, because I have been since my mid-teens.
Yes-basically, once you start, you have to stay on it. There are probably exceptions, as there are with everything, but with Remicade as with Humira, most people can't start and stop taking it because if you go off of it, your body will build up antibodies to it and it will no longer be effective. Some people do build up antibodies to it while taking it as well and it stops working. You just never know what will happen! But I wouldn't let that stop you from doing the trial.
How long is the trial? My Humira one was one year for the double blind, but then they rolled us all into an
open label study (where everyone knows they are on the med, and they just study the effects), which was 5 years (I only ended up doing about
10 months of that though). Would that be an option? I would imagine that once they get you on it, they will do everything they can to keep you on it. I imagine they could and would go to bat for you. I know my GI has gotten things approved for people by writing letters and such.
I hope that whatever you decide to try works for you-you have a lot of exciting things coming up, and I know you want to be able to be at full strength for those things. Good luck!