Failing Remicade, experience needed

Has she tried Rowasa enemas along with the Remi to help get her into remission? I know many that have had to use the Rowasa's to get them over the hump. I went into remission quickly with Remi, but still had some bad days. It took about six months before I was totally feeling better and just about a week before my infusion, I would have a little urgency but no blood or mucous. The problem with these meds is that they work for some but not others. Has her doc mentioned anything to help out? Has he talked about Humira? If these don't work and surgery is an option, read about Bratcat who had the surgery. She is doing well.

Katmon- have you discussed with the doc yet possibly trying Refaxamin, a non-systemic antibiotic? Before I resort to surgery (if Remicade doesn't get me into a pred-free remission), along with Humira, I consider it something else to try, since it seems to work well for some.

Thanks for the posts.
RE; the Rowasa, she started on those when she was first diagnosed, and it increased her frequency. Poorly tolerated. Now she is using the Cortifoam nightly, she she is treating from both ends( as Quincy likes).
RE the study: it is not blind. She is getting the med., and the only thing they will be looking at is the frequency. There will be 8 and 12 week intrevals. At the present, she can't make it one week on the same dose, so...
The doc never mentioned Refaxamin, so I will ask. I cannot bear the surgery option right now. Need some time to digest. Humera is possible, though the doc was not too hopeful considering it acts in the say way as Remicade. One possibility is to drop out of the study, and get a double dose of Remicade. We will probably try that unless someone warns us otherwise. Unfortunatly, Remicade is not approved for children (hence the study), and the insurance may not pay. They denied us right off of the bat, but we will appeal...at 10k per infusion, it is a mighty big bill!
K

Sometimes it takes up to five infusions for Remicade to work properly.

I wasn't having much improvement after my 3rd Remicade infusion either, but my c-scope showed that only a few centimeters of inflammation was left, so I canceled surgery. And so I tried different combos of rectal meds. My 4th infusion and alternating between Canasa and Anucort (steroid suppository) helped me dramatically.

Rifaximin only helps about half of the UC patients. It made things much worse for me, but it could be worth a try.

I had a similar response to your daughter on remicade at 5 mg (4 infusions) and thought, along with my doctor that it was not really working...I did not want surgery and refused to give up hope on the remicade.  I asked if he would double my dose and immediatly after that 10 mg dose, I have been symptom free...that's been for four months now.  It's terrrible that insurance won't cover the cost of this med.  Definately try the Humira if you can get it covered or if there are no other meds to try.

Good luck to your daughter in dealing with this disease.  Surgery and the ideas of it are now are not as scary now that I know I've tried almost everything and if Remicade stops working, I think I'd be okay withthe surgery after hearing how drastically it has improved the quality of life of those who post on this site.