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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Starting Remicade-whatto expect?


04-23-2014, 04:53 PM   #1
joelh
 
Join Date: Jul 2013
Location: siler city, North Carolina
Starting Remicade-whatto expect?

Have been on Lialda for a year and it just isn't working. The only thing controlling flares is prednisone. After a disastrous attempt at Imuran (ended up with pancreatitis) the doc says it it time to try something else. I had the tb test and am set up for 3 infusions. Anything to be concerned about? How long does it take to see results?
04-23-2014, 05:14 PM   #2
theOcean
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Location: Toronto, ON, Canada

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Talk to your GI about if you should get a dose of antihistamines before the infusion. You will be supervised the whole time by a nurse. The result time varies -- I felt the Remicade in my system instantly, but it turned out I was allergic so it didn't actually help my UC (diagnosis later changed to Crohn's). For some people it's instant, for others it takes awhile. Just make sure your GI follows up and that they do a test to check for it in your system.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-25-2014, 10:00 AM   #3
Sarahnarizona
 
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Location: Goodyear, Arizona

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Have been on Lialda for a year and it just isn't working. The only thing controlling flares is prednisone. After a disastrous attempt at Imuran (ended up with pancreatitis) the doc says it it time to try something else. I had the tb test and am set up for 3 infusions. Anything to be concerned about? How long does it take to see results?
Hi!

I am currently on a 5 week cycle of Remicade and the max dose of Lialda as well as Entocort. I am not going to take Imuran because I want a baby and really don't want to mess with that drug.

I was nervous my first infusion, I think everyone is, but the nurse that did mine was awesome. I was given two Tylenol and a benydryl. The infusion took about 2 and a half hours the first time and I went home and slept for about 2 days! It knocked me out!!!

8 weeks later I had round two. I was given the same pre-meds but had a reaction. I had sever back pain and hives. I was given 50 mg of benydryl push and solu medrol to help get me through the infusion. My infusion nurse made a note of it and ran my infusion much slower. That one took around 4 hours.

Fast forward to a week ago. I have been doing these infusion more frequently because the remicade really really works for me! I stat a flair at week 5 and by the time my infusion rolls around a week later I am in pain again. We have moved my infusions from 8 to 6 weeks and now I am at 5 weeks. The drug really works for me but I seem to peak quicker then most. My infusions are a bit different then others in the infusion room at the time because of my reaction the second time. Now I get the IV then 50 mg of benydryl push I take 25 mg benydryl orally and 1000 mg of Tylenol. I have a drip of solu medrol while the remicade is being infused at the same time. My infusions take around 3 hours and I sleep through most of it. I go home sleep the rest of the day and by the next day I am usually back to my normal self.

What I do seems a bit on the crazy side compared to most. They come in sit down play on there tablets and get the drip. No pre-meds no second drip. I am allergic to everything and my body is very sensitive so I am not surprised I get all the extra side effects.

Remicade had made me a functioning working adult again and I really do call it my wonder drug.

Good luck to you. Let us know how it goes.
04-25-2014, 10:39 PM   #4
West Texas
 
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Join Date: Apr 2014
Location: San Angelo, Texas
I was on remicade for a little over 2 years, going in every 8 weeks. I took to it very we'll. everything was great while on the drug. I Could eat anything and drink anything I wanted. I kind of took advantage of that and now my waistline is showing it. We'll all good things must come to an end. I went in for infusion (usually takes me 2.5 hrs) and I started to feel real funny. My nose instantly and completely closed up, and there was a strange feeling in my chest or lungs or heart. It's hard to describe the feeling but I know it wasn't right. With previous infusions, I never had to take anything before or after the visits with no problems. My last visit the dr. Had me take. 1000 mg Tylenol and some Benadryl an hour ahead of time. They even gave me a shot of something to help. But like the previous visit, within the first 5 to 10 minutes I was having the same reaction. It was a great 2 years but I wish I would have started a healthy diet then instead of now while fighting symptoms. Just my .02. Good luck.
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