OMG, I sooooooo can feel your pain/frustration etc etc etc...... I was put in what I considered complete remission in NOv 2007.....I was in the hospital and had the S word mentioned to me for the first time....(SURGERY!) As a last effort, my GI suggested remicade, and I was so for it..anything to get rid of the WORST flare I"d ever had, and to get out of the hospital...Well, I got it the next morning, and I was discharged from the hospital the next day!!! I considered it my "miracle" drug!! I'd even had a few "stomach flu bugs" from my kids, and had it for 24-48 hours and recovered just like they did....(in the past, ANYTIME I got a stomach flu bug, it put me in a flare)....But I must add, that while on remicade, I would have a few loose stools, and GI upset whenever I started my period,, but it would always improve as welll....at least until July 1st (when I started it)....I had my usual loose stools, and Gi upset, but then things kept progressing...I started to get the fatigue, mouth sores, then diarrhea, then mucous, and blood, and then the severe cramping and urgency!! I knew I was in full flare!! So, back on that evil drug, pred....it took a while, but finally started to help the flare...then I got my next remicade on the 31st....yay! All flare symptoms are better again, but now tapering the pred...I sooooooooooooo worry about
the remicade losing its effectiveness......I have heard that its happened to so many people on here....But I'll tell ya, I'm nearly ready to "throw in the towel" and just have the surgery. someone brought up a good point to me once...."why take so many drugs that have all the potential side effects and long term risks, just to hold onto a colon that is already diseased, and causes us so many problems"....hmmmm....good point!!! Anyways, I read your post, and felt like I had written it...(and by the way...I hate the RAGE feelings I've had on this taper of pred!!) OMG< I felt like I was going CrAzY!!! Good luck on your taper!! Hang in there!!
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo). Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily, and pro-biotics daily.