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Remicade and flare up

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Ulcerative Colitis
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Posted 9/1/2007 8:16 AM (GMT -8)

I just had my 4th infusion on Aug 6.  I have had a heck of time getting this under control for the past year and a half.  Finally, I saw a break with the remicade and my symptoms had been non existent for the past 2 months. I felt like my old self before this disease.  It was great!  Then with out a warning this past Thurs my cramps and bleeding came back and bm's increased.  My dr put me on cort enemas--which work but have never put me in remission in the past- and he is going to increase my remicade dosage rather than put me on a 6 week interval.  I am very disappointed and frustrated over this.  Has anyone had the same experience or have flared up on Remicade?  And what medication did u take? 

Posted 9/1/2007 8:49 AM (GMT -8)
I'm going thru just what you are right now- tell me about frustration!!!!! The only new med I'm on right now is Cipro- my doc told me it's used as a Pred alternative, & it does seem to help a little. After Remicade, it's my understanding that surgery is the next step. If you opt for it, of course. I'm looking into Humira, but my doc won't give it to me yet! Which also frustrates me, but I understand his reasoning- since it's not FDA approved for use in UC, it hasn't been sufficiently tested in UC patients. Come on.....!!!!! But I have a 2nd opinion consult (at the urging of my GI) with a really reputable doctor at Beth Israel Deaconess Hosp. in Boston, & am hoping he can give me some info/advice, etc. I wish I had better news for you.... I also felt fabulous when the Remicade first worked. I've also had 4 infusions, & have not yet scheduled the 5th- not sure right now if I wll or not, seeing as it's not working anymore.

Posted 9/1/2007 4:10 PM (GMT -8)

 hi there  i just read your question,   i have going on my 6th infufhion but i go about 8-10 weeks so do not give up .     i had alout of adjusting to eating, I know when i have to get treatment done when i have cramps and bleeding  so try to adjust.

Posted 9/2/2007 9:13 AM (GMT -8)
I was afraid it wasn't working any longer. about a week before my last infusion, I started to cramp and get D, but no bleeding. Since I started the cort enemas, the bleeding has gone away. I just wonder how to plan my life with this disease. That might be a topic for another post. It's so hard and not alot of people understand this disease. I'm still trying to figure things out. I always think it could be worse, it's hard to put it all in perspective when you are so frustrated and flaring and dealing with all the medications,etc. My dr said that if the Remi doesn't work, my next option would be to be evaluated for surgery and after reading the j-pouch website, it doesn't sound so bad. At least the disease would be gone and no more meds. Just have to adjust to the surgery, but it seems you wouldn't be battling UC all your life. So confusing!!!

Hearing your feedback has made me feel better. Thanks!!!
Posted 9/3/2007 9:59 AM (GMT -8)
Well, it took my body time to adjust to. I just had to figure out what food suited me, probiotics, etc. Everything is not always perfect, but better than ever before the Remi. I've been doing the remi for over two years, and I can say it took about 6 months on Remi before I really started adjusting to the med and felt better. I mean i had immediate relief, but I always knew when I needed a treatment. Now I have to mark it on the calendar to remember because most of the time I feel pretty good. Hope this helps.
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