remicade questions

Hi Donna!
I just had my first infusion on the 19th so yesterday or today depending where youre at in the world. I was allowed to have my husband come with. I ate a little before I went and they had snacks there. They even let my husband bring me food in because I would up being there for 7.5 hrs. That's not normal it should be like 2-3 hrs I think. They needed to run my infusion super slow as I had some complications. Everyone was so nice and helpful. My GI doctor has a specific Remicade room so there were nurses in with me all the time. I was really nervous about going so I tried to get up earlier than I had to be there so I could try and go to the bathroom as much as I could before I got there. I'm currently in a flare. Not sure about how I'm doing since the infusion because my dr let me take an immodium for the first time before hand. Oh one thing!! Take an OTC heartburn pill before hand. I took some and I still had heartburn so I can't imagine how it would be if I hadnt. I read that from others posts.
Goodluck!

I was on Remi for over five years, and it's kind of a nice down time. I used to think -- who would want to look for me here?! I took some magazines, ipod, and slept on and off. The first few infusions will most likely be a bit longer because they want to make sure you don't have any reactions, so they do the drip slower. After that, the drips can be faster, so it won't take as long. My last couple years of infusions, I was down to an hour. They will probably give you Tylenol, and maybe Benedryl which will make you sleepy. As my infusion times got shorter, I switched from Benedryl to Zyrtec so I would not be as sleepy. You can get up and go to the bathroom, they just unhook you from the power supply and you walk with your IV. I would bring a snack, but most people say their centers provide drinks and snacks. The best part....warm blankets. As soon as they put that on, I was out for a nice nap! I'm in total remission now from the Remicade, and I couldn't be happier. Good luck with the infusion, and let us know how you did.

Hi dgtracy; yes, I am off Remicade; since September 2010. In August of 2009 I had a colonoscopy that was clear of any ulcers or polyps and my doc wanted to take me off of it then, but I was a little hesitant; feeling so well I was afraid to go back to feeling like heck again! But I had a reaction and decided that my body was done taking Remicade. So I went on the maintenance meds of Asacol, taking probiotics and other supplements (D, Cinnamon, Magnesium.) In January of 2011, I had to go on my husband's insurance therefore had to find another GI. He decided he wanted to do a colonoscopy before he ordered meds for me. Again, clear of ulcers and polyps. So he lessened my meds to six Asacol a day. Still doing fine....

hey, I noticed within two days that the remicade was working because all my bleeding stopped.  Unfortunately, the success only lasted 2 infusions.  Mine took 3-4 hours.

I am late on this, but I have been on remicade for over a year now and am doing very well. It got me into remission after I would say 4ish infusions. I did have to have benedryl for the first few I had-so someone had to drive me. Mine also are in an infusion center in my GI's office-just 2 recliners, a TV, IV stands, etc. I am always allowed to eat/drink, and I usually nap these days because being pregnant, I am just tired all of the time.

The pregnancy had actually improved my remission (meaning really that I was able to ease up on my diet-I have remained steady in terms of BMs and all of that), and I am very happy with it so far. I know it won't last forever, but for now, i am enjoying the remission! I have 1-2 normal BMs a day (usually one these days-I am taking extra iron, again for pregnancy, and it has things a little more bound than usual), no urgency or bleeding. That is a normal remission for me. (flare for me is 10-20 bloody BMs/day with intense urgency. Actually, most of the 10-20 are just blood-the first few of the day will actually contain stool)

My infusions take 2 hours plus time to get set up and then remove everything. Some people take longer-I seem to handle the medication well and not need any additional time.

pretty much the same as above for me, approx 3 hours long in the Dr's office w/a recliner and I drink plenty of water and have a snack.

I felt better after a couple days of my first infusion, had my second one on May 13 and my next one is June 10.

I am still on prednisone, so that is the big question mark for me, though I do not think the pred helped me much this time and I was still flaring while at 20mg when I started the remi. I hope to be off the pred in about 4 weeks. and I flared two months after I stopped pred the last time (but I was in full remission then from the pred). I hope it's the remi that is working.

I'll think of it as a MY DAY as well haha. That way I dont get to nerved up. My sister did say she'd go with me. I'll askt he nurses of course prior to be sure.

Thanks again for all your responses its helped me a lot