I have not had any reactions to Remicade and no one else at the facility have had negative side effects.

They do give me benadryl and a steroid to decrease chances of a reaction, so I get very tired and then have affects from the steroid like being really cranky. ;)

I do tend to have a little more D and that might be from the Remicade.

Basically it takes me 4 days before I feel good after the infusion.

Your Dr/GI knows what is going on with you (I am assuming) and thinks that this will work for you. Give it a shot (ha ha) and believe in the best until proven otherwise.

Hope that the Remicade helps you. It has reduced my pain tremendously and decreased my number of trips to the bathroom (at least usually). I am currently weaning of pred. so things are not a great this time around, but still tons better. I am at the lowest dose of pred. in two years and still doing well because of the Remicade. I have yet to be in remission, every, but even if I don't reach it I prefer this state to where I was before the Remicade. I can actually feel good and feel like doing things and seeing the world vs. sleeping ALL the time.

Good luck. If you have more questions feel free to ask me and I will try to help. I am still new to Remicade, so I certainly don't know everything. :)

Rachel

thank you, Rachel, that is encouraging.

I can't take steroids. well, i use cortifoam enemas, but i can't take prednisone or oral steroids, because it gives me cognitive side effects (can't concentrate, cant think clearly, severe memory loss) and personality changes among all the other usual fun side effects we all get from prednisone - insomnia, moon face, weight gain, etc.

because of my history of adverse reactions, i am nervous - I am now up to 8 classes of drugs i can't take. I'm hopeful that it will work - Imuran was starting to work before the bad reactions set in, so i am hopeful that i will have a good response to remicade and no side effects.

I hope the Remicade is effective for you. Of all the medications that my son has tried, I think we liked Remicade the best. He did not experience any of the side effects. His pain was well controlled for the first time in many years. His labs were looking good for the first time in many years too. He was able to settle-in and make the most of his infusion time.

Remicade is highly effective for many people. My son was on it for about a year. Unfortunately, it did not control his Crohn's. New strictures formed and we had to move on to Humira.

I hope you have better success with it! Best wishes.

I didn't have side effects. Remicade actually helped me wean off the prednisone, which did give me awful side effects as I was on/off it over the course of a year.

Unfortunately, I was one whose disease was too aggressive for even remicade and recently have surgery. However, if I could do things over again, I would have gotten on Remicade much sooner than I did. I can't help but wonder if the Remicade had met my disease early on if it would have prevented the damage that rendered my colon non-function.

Anyway, as Rachel said, if your dr is recommending this, they have decided that the potential benefits outweigh the risks. Also. I had to be put on Remicade on an emergency basis when a flare snuck up on me (not fun), so best results will likely be had if you start when you are somewhat stable. If you have any other questions, feel free to message me :)

Amanda

For what it's worth, once the infusing itself was done, I didn't experience any side effects from Remicade. (Your mileage, of course, may vary.)

I don't know if this counts as a side effect... but kind of a tertiary benefit of Remicade - it clears up acne. So if your skin is messed up from prednisone, this may help.

Good luck
-B

ps cute kitteh!

Thanks B! It is great to here a positive side effect. Luckily i'm not on pred due to its side effects but still, positive.

Kitty is my Daisy, she's a great heating pad.

I got diagnosed 4 mon ago, 2 wks after I gave birth to my son Isaac. I am 20 yrs old and it never crossed my mind that I'd be going through ulcerative colitis. Today was my first Remicade infusion, it took 5 hrs. So far everything went well. Seemed like it took forever. I am currently on Prednisone, 30 mg for the past mon and a half. Personally I feel like it gives me mood swings. But I've also noticed if I forget to take prednisone, say 2 days in a row, I start seeing blood again, cramping, painful bowels.

@anilba - In my experience, ~5 hours is pretty typical for a Remicade infusion. And when you're on a decent sized dose of prednisone for any length of time, stopping cold turkey for a couple days can definitely lead to the issues you mentioned. You have to taper off over time, rather than going cold turkey.