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Ulcerative Colitis
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Posted 8/20/2008 10:47 AM (GMT 0)
I have been diagnosed with UC for over a year now, and have been in a constant flare up the entire time. started with all the normal medications like asacol and enimas, but nothing seemed to work. i was put onto prednisone for about 4 months until that stopped working...so i was moved to 6MP treatment, which was a pretty nasty pill that caused me to get blood tests every week. however i had an allergic reaction to that which put me back into the hospital. 5th time this year, and now i am back on 40mg of prednisone until i start Remicade.

i have been doing the research and everything on the treatment, but am still quite confused on what exactly it is or how most people react. any comments or anything i should be aware?

just hoping to get this under control so i can be a normal college student again.
Posted 8/20/2008 3:39 PM (GMT 0)
I just had my first infusion and it went fine. It took about 3 hours and the only weird thing was my hand got numb. I might be doing a little better but that might be in my head. I am on 20 mg pred still. My nurse said 5% have reactions and there was one guy in there who has reactions to it so they dilute his medicine so he has to be there for 8 hours. I felt bad for him. My doc said it works for 60% of steroid dependent people with UC. I guess people with crohns respond better. Im glad I decided to go with remicade. Hopefully it will get me off the pred. I was worried for some reason that I wouldn't be able to use the bathroom during the infusion but you can wheel your IV stand into the bathroom with you. Good luck with it.
Posted 8/21/2008 12:24 AM (GMT 0)
I have been on Remicade for just over a year now. It has helped me a lot but I am still not completely in remission. I have tolerated it very well and it allowed me to FINALLY get off of the Prednisone after two years on it. Currently aside from the Remicade the only med I am taking for the UC is 4 Lialda tablets every morning ... that's down from a high of 15 pills six months months ago (not counting supplements).

I wish I experienced some of the miracles some of the other people here have, but it's done wonders for me. I have to have it every six weeks rather then every eight. I'll be going for a colonoscopy October 13 to see how my colon looks and if there's been any healing. I am pondering having the surgery, but it seems so drastic. Last fall I honestly felt like I wanted to die I felt so weak and lost 20 lbs in a month -- gained it back and more though! My thoughts are that if there isn't significant healing I should probably consider the surgery while I am in a relatively healthy mode. I just dunno ... but I think you'll be fine on the Remicade. Most people seem to tolerate it well. If you have any reactions they'll happen while you are in the hospital or infusion clinic and where you can be taken care of. I don't need any premeds (some people need Benedryl) so I am not tired afterward. Just bring plenty of things to keep you occupied for the three hours of chair time. My routine is to pick up a bagel and coffee on my way over since I schedule it in the morning and the hospital breakfast sux. I have a Zune loaded with podcasts, the paper, maybe a book and my current needlepoint project. The time flies. Sometimes I even just sleep in the comfy chair.

Meesh
Posted 8/27/2008 2:22 AM (GMT 0)
Sounds like my exact story.  Was diagnosed 8 months ago and in a flare ever since.  Pred stoped working, asacol and a couple other mesalamine pills (can't remember their names) didn't work.  Went on Imuran for about 4 months with no results at all. 

I just had my 2nd remicade infusion and things are starting to turn around.  Blood has really diminished, frequency and urgency are getting better as well.  It's not remission, but its the first thing that is giving me positive results. 

I've read some of the other postings and was nervous about the first infusion as well.  Let me tell you its no big deal at all.  They put an IV in your hand and the nurse will mix the remicade with saline.  Then you sit there for 2 hours and your done.  It's really quite boring.  Your hand gets a little cold from the saline going in, but other than that you don't feel a thing.

Hope everything works out for you.  As you know this disease really sucks.

Posted 8/27/2008 2:45 AM (GMT 0)
On Remicade since March 2006. In remission since April 2006. Flared from prior to official diagnosis in November 2001 until April 2006.

Needless to say, I'm a happy customer.
Posted 8/27/2008 7:07 PM (GMT 0)
Reverant,

Wish I had seen this sooner, sorry for the late reply. As luck would have it was in for my first remicade treatment the day you started this post. In there with me was a college student also getting remicade, this was the 3rd semester for him on it. I asked him if he'd mind some questions since it was my fist time and well I never had to deal with it at that young of an age so I was curious (I'm not a shy person LOL)

He was happy to talk about things with someone who understood the disease. He said that remicade has actually helped his life as a student. He only schedules on days when he's got afternoon or no classes so the IV times aren't forcing him out of any classes. He doesn't have the urgency so he's able to stay in class AND concentrate without worrying how much he's going to miss by running to the facilities all the time. He doesn't have to borrow notes or do make up work to get his grades up from missing too much, he's all around happy with it. He said the only thing he is bothered by with remicade is that he didn't start it sooner because his first 3 semesters would have been alot easier.
Posted 8/27/2008 11:53 PM (GMT 0)
Remi has been heaven sent for me too! I've been living an active life and actually feel great after my infusions. I call it my go-juice!
Posted 8/28/2008 2:20 AM (GMT 0)
I too have been on remicade, back on it now after an almost 3 year break. I've found now, that after being on it (the intro phase is a lot more, you get the medication more in your system.) Now, I only go in every 8 weeks, which I think isn't the best, because I think that I need to be on it more. I feel great when I get out and for a few weeks after, but then it feels like it starts to wear off...
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