Posted 5/19/2010 1:19 AM (GMT 0)
I've been on prednisone for about 3 weeks now, I'm at the point where I am slowly tapering down (Was taking 5 pills, I'm taking 4 pills now, moving to 3 in about 5 days)
The plan was originally to taper down the prednisone and move to pantasa, but the latest CT scan is showing that my fistula/abscess is not going away. So my GI says "how are we going to make this thing close", and tells me that he wants to move me to Remicade.
Now, I trust my doctor to choose the right medication for me, but I have read in many places that Remicade is usually a last-resort before surgery. Maybe this is the time for me to move to Remicade, but I'm just wondering if there alternative medicines I should discuss the possibility of trying with my doctor before I go forward with getting Remicade infusions.
I'm pretty confident the Remicade will work, but I just don't like getting started on it so early (I just turned 21). Who knows when it will stop working, or when they will decide to take me off of it (once you go off of it, you can't go back, right? I feel like I'm going to have a 20x worse fistula in 10 years but I will have already used up my one shot at Remicade).
When you get on Remicade and it is working - at what point do they usually take you off of it, or do some people stay on it forever? Is it the kind of thing where you want to stay on it as long as you can until it stops working or you start having really nasty side effects?
I have a lot of literature that they gave me about the drug that I've been reading, but I know some of you have first hand experience so I definitely want to read what you have to say. Thank you!