I've had an excellent experience with Remicade. I think some people are hesitant to try it because going in for infusions can be inconvenient, but I'd walk through fire for this stuff. My reaction was pretty immediate, I went into full remission within a few weeks and within 6 months was pregnant (don't worry that's not a side effect of the Remicade...but for me that was my goal. :) )
--I'm assuming you have health insurance, and that perhaps it's time for open enrollment for 2009. Talk to your HR department about the insurance options available (if you have a choice of companies or even a choice of EPO vs PPO.) The actual cost of Remicade is upwards of $6k per treatment (most people have treatments every 8 weeks) meaning that if the insurance company covers even a healthy 90% you will still have a lot to pay. The most expensive offering may not even be the best coverage - with mine, the EPO pay structure is more beneficial than PPO for Remicade. Take a close look at all of your options there. And remember that whatever you will end up paying in the end - try to sign up for an FSA account so that at least that amount will be tax-free. While you're asking, ask about Humira too - the costs may be lower since it's done at home versus in a hospital.
--If you move forward with Remicade and work a desk job, talk to your boss about getting a laptop and Internet card so you can work remotely - that way you won't have to use sick or vacation time during treatments and can still be productive. Either way, try to schedule your first few treatments in the afternoon so you can go home and sleep afterward - some people get very tired following treatments (not me- I am energized and can go right to work after, but everyone is different.)
--Bring a snack and water to the hospital, as well as something to keep you entertained (or a pillow/blanket so you can sleep.)
--Have your significant other or a trusted friend read the side effects - don't read them yourself (I recommend this for any new drug you try.) Studies show you're more likely to experience a side effect if you know about it. If you don't know what they are, maybe you won't have them - but if you start to feel strangely in any way you can have that partner to tell you if this is just a normal side effect or if you should call your doctor. I did this and have had no negative effects from the treatments.
--The day after your first treatment, schedule your next one. My hospital gets booked up quickly and I always want to make sure it fits within my schedule.
Dx CD 2003 but probably had it 10 years prior
Dx Primary Sclerossing Cholangitis 2006
GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05
Currently on 100mg 6mp-50 mg, and Remicade every 8 weeks, Ambien, predsnisone, humira