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Remicade!

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Ulcerative Colitis
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Posted 8/11/2010 2:55 PM (GMT 0)

So.... I think I've only posted on here maybe once before- but I read others' posts all the time, and have really gleaned a lot from this site! Anyway. I am about to start Remicade this week, and I have no idea what to expect. Can anyone tell me what I'm getting myself into? Haha. I'm not really in a complete flare right now, but as I've been tapering off of Prednisone, my symptoms have been getting worse... obviously the Asacol is not going to be enough on its own, and I've pretty much been on every other medication there is for this (including Humira- best remission ever! For a few months anyway...), and the UC has always found a way around them sooner or later. So, my doctor said the next step is either Remicade or consult a surgeon. Anybody have any words of wisdom regarding Remicade? :-)

Posted 8/11/2010 7:15 PM (GMT 0)
Im in the same boat. Tried all the 5-asa, all blood tests said imuran was fine but had a bad reaction right away (sick to my stomach on 50mg, and when upped to 150mg couldnt function) doc did another scope yesterday and has remicade setup for tomorrow, stressing as I start a new job next week! I wish you the best of luck.
Posted 8/11/2010 9:13 PM (GMT 0)
I go in every 8 weeks, settle in to a big lounge chair. She puts an IV line in (back of hand, never even leaves a mark!) and takes blood for testing. Then I get the IV drug, then a short "rinse" of saline. It takes about 2.5 to 3 hours. She takes my blood pressure many times throughout. I bring newspapers, magazines, a book, crossword puzzle, my Blackberry. I am given my own small treatment room, no TV like some infusiions centers. Because medical office lights are so bright, I ask them to turn off the overhead lights and they let me use a desk lamp, it's more peaceful.

I never feel any different after, even the first time I didn't (except it was new to be in remission). I go about my day, even play golf with no problem or effects.
I stopped bleeding immediately, for the first time in more than 20 years. So it really works for me.
Posted 8/12/2010 12:58 AM (GMT 0)
I'm going in for my third infusion tomorrow. So far I feel great! For me I get a little tired and I seem to have more headaches...nothing major. Just try really hard to avoid getting sick.
Posted 8/12/2010 1:20 PM (GMT 0)
Thank you for your responses! I've never had a negative reaction to a drug before, so I'm hoping I'll be fine with this, too. I'm actually starting to get a little bit excited about the possibility of this actually working... hehe. One more question... I don't know if it depends upon the hospital or medical office, but will I be allowed to have someone come in with me while I'm sitting there with the IV? My boyfriend would like to come along... and I'd like him to be there.
Posted 8/12/2010 2:17 PM (GMT 0)
Ju330--my experience with remicade infusions themselves was similar to Peety--I used to think of it as my 3-hour "Me Time" !
Unfortunately remicade didn't work at all for me and we quit after 3 doses. There goes my me time!
Best of luck!
Posted 8/12/2010 5:09 PM (GMT 0)
I think they would let him be there, but I think it would be cruel to make them sit there all that time!
I suggest you just be willing to let him leave if you find out you are completely comfortable and don't need him, and he is bored silly. :)

I was also so excited to get my first infusion, I even cried a little! The potential for relief, after so long...
Think positive!!
Posted 8/12/2010 6:53 PM (GMT 0)
I started remicade in Feb in the hospital. I also had been on Humira and all too. Humira worked IMMEDIATELY for me, but remicade did not. It took a few infusions to get into a good remission, and even now I have "off" days (no blood, but I'll have more BMs and it will be thinner). I've had 5 infusions now and so far, so good. I, too, go every 8 weeks for the infusion. It takes me 2 hours and is a nice relaxation time.

The second and third infusions, I felt a little off-tired and achy-after the infusion, but since then have been fine and been able to go about my day normally after the infusions.

As far as having someone with you-that wouldn't work at my GI's office. They only have 2 infusion stations in the office-two recliners and that is it. I had to have a ride for the first few infusions because they gave me benedryl the first few times, but my ride didn't stay. But being the mom of 2 young kids, I prefer the peace and quiet anyway, lol. You will have to ask about having your boyfriend with you.

Good luck!!!
Posted 8/12/2010 8:26 PM (GMT 0)
I had benedryl the first time, but when it was apparent I had no allergic reaction it was not used again.

I have had absolutely no blood since my first infusion. And I had been a daily bleeder, always. I still have loose stools, but my GI thinks it's because I have "lead pipe colon" from it being inflamed so many years, lots of the muscular is gone and there is a lot of scar tissue. But I have normal urgency, and I go usually two times per day. On May 19, 2009, I didn't poo at all, first time in probably 25 years. It was a good day.
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