Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Hi, I started remicade about two days ago and have been having a very positive but not complete result.. Does anyone know if the Remicade will continue to improve things over time?
Also I hear alot of people saying that Remicade worked well for them for a while then suddenly stopped working after a year or so. Has anyone experienced long term remission with this drug?
I have been on everything and nothing has kept me well for longer then a year, including two hospitalizations with IV sterods. Doctor says Remicade maybe my final shot to avoid surgery. Thanks for your thoughts.
Also I hear alot of people saying that Remicade worked well for them for a while then suddenly stopped working after a year or so. Has anyone experienced long term remission with this drug?
I have been on everything and nothing has kept me well for longer then a year, including two hospitalizations with IV sterods. Doctor says Remicade maybe my final shot to avoid surgery. Thanks for your thoughts.
My sister's situation was pretty bad -
She was in such bad shape when they discovered her Crohns that she needed resections and colon removed. Even then, every few check-ups she'd be in active stages of the disease all over again. Narrowing passages - pain - loosing weight. Remicade has been her miracle drug. With her first year of IV treatments I believe they were strong doses after an hour drive home from these treatments she would sleep the remainder of the day (she would feel whipped...and a little nauseous ) the next morning she'd be up & going just fine - like a ball of energy! Her visits seemed to get easier or she was just used to the routine -
They backed the dosage down only giving her enough to maintain remission and her visits stretched farther between visits too. She's been on Remicade for over 10 years... This past summer she was feeling brave and asked if maybe she could try without the Remicade... because they don't know the long term effects of being on such a hard drug.
They slowly weened her off (rem) taking about a year - only to last 3 months being totally off of it and then it started - pain, loosing weight etc. Scary!
Usually once you quit a drug like this it may not work for you again... She was lucky - It worked again. She's doing well.
Hang in there - you'll see results soon to know if Remicade is working for you. They have sister drugs to Remicade one is bound to be helpful. My sister with this miracle drug is amazing wish I had her energy - I'd give some to all of us!!!
I've been lucky enough that my diet alone seems to help avoid flare, so no drugs for me... Wish you the best along with everyone else reading, take care.