For those who had bad Remicade reactions.....

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Regular Member

Date Joined Oct 2006
Total Posts : 153
   Posted 7/7/2008 7:07 AM (GMT -7)   
I'm finally getting my first Remicade infusion tomorrow. Yeay! I'm hopeful that it will do what it's supposed to do and I will tolerate it well. However, I'm a bit nervous after reading postings on some peoples' reactions. I noticed that some people ended up in the hospital after their 3rd infusion due to a bad reaction. Can anyone tell me what signs to look for. I live alone and my fear is that something will go wrong very quickly and I will not be able to get help. I guess I could always stay with my parents the day of an infusion and the next day just to be on the safe side.   
32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 4g x four times daily and probiotics.

Veteran Member

Date Joined Jan 2006
Total Posts : 730
   Posted 7/7/2008 10:17 AM (GMT -7)   
I've never had a reaction in 5 years, but I'm always a bit concerned about it based on the number of folks here that have. I've asked the RN a lot of questions about this and it has made me feel a lot better.
Make sure you ask about premedications. They can give you some medications before the infusion to reduce the risks or lessen the severity of any issues at the time of the infusion.
The RN will/should also give you some information on what signs to look for and what to do if they happen down the road. I know I have been told many times to call a doctor immediately or go into urgent care if X happens.

It's probably a good idea to check in or stay with your folks for a bit since you are starting a new medication. Not sure if one extra day is enough though. I've heard about people having issues a few days after infusions. Not sure if any of them come on fast enough that you wouldn't be able to make a phone call or not.

Keep in mind that while there are a number of people on this site that have had reactions, there are a lot of us that never have had any. It's pretty common to hear more about the down sides of a medication than those that have never had an issues.

I hope your first infusion goes well. Make sure you ask a lot of questions, the more knowledge you have about what is going on, the better you will feel. I've been doing that for 5+ years now and "my RN" as I call her has taught me a lot. So far I can pretty much do the entire infusion on my own, other than the actual needle stick. My infusions are done as a one on one thing, so it's just me and the RN in the room. I've made pretty good friends with her over the years.
Matthew McKenna,

"I'm just along for the ride."

Forum Moderator

Date Joined Nov 2003
Total Posts : 7122
   Posted 7/7/2008 2:54 PM (GMT -7)   
One thing you need to consider is that some of members that post here are those with more complicated cases, newly diagnosed, or that have difficulties with medications and disease complications. There are literally hundreds of thousands of people with CD that lead relatively normal and active lives and find no need to utilize a support forum such as this. For every post about a negative reaction to Remicade, there are many, many more people that have good success with the medication.

That said, one must certainly weighs the pros and cons of taking a biologic medication like Remicade or Humira. There are risks as with any medication. Remicade successfully put my gut into remission and greatly controlled my arthritic problems. I received infusions for 2.5 years before it stopped working for me. I never had an infusion reaction.

I hope that Remicade greatly improves your Crohn's!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Regular Member

Date Joined Apr 2008
Total Posts : 60
   Posted 7/7/2008 3:08 PM (GMT -7)   
I started Remicade in April. I haven't had any side effects from it.  In fact, I've felt wonderful!!
Good luck!!

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 7/7/2008 5:23 PM (GMT -7)   
I am one of the ones that had a reaction to the Remicade at infussion 3. I was pre-medicated at each infussion but still had a problem.
I got real weak, was dizzy, and just didn't feel right at all. I put a call into my doctor and he put me in the hospital. I ended up
having a super low white cell count and that was messing me up. I spent about 4 days in the hospital and was good to go after that.

Like Ides said- There are so many people that it does work for so don't like this scare you!!! Very few people have reactions to
it and most if they do have a reaction, it isn't until they have been on it for several years. It just didn't work for me.
I have had bad side effects to a lot of the Crohn's meds out there too so that could be another reason. I just have a very
sensitive system.

Good luck tomorrow and I'm sure everything will be just fine!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
No Surgeries

Regular Member

Date Joined Jan 2006
Total Posts : 355
   Posted 7/7/2008 7:08 PM (GMT -7)   
My reaction happened as I was having the infusion, not when I got home. I was premedicated with Benadryl and Tylenol. What happened to me was that suddenly I felt my heart racing and I got very hot and flushed in the face. I can't really explain it exactly but it felt really strange and like I was having a panic attack, which I have never actually had. I found it kind of hard to breath and felt some pressure on my chest and neck. The infusion center was very busy that day and I was in a little room off to the side instead of the large room. I was with a man who was getting chemo and he was sound asleep. I didn't want to wake him or alarm anyone and didn't really think what I was feeling was due to the Remicade. It was all very strange and passed in about 5 or 10 minutes. I told the nurse when she came in and she seemed unconcerned. This was some years ago when Remicade was still quite new.

The next time it happened again but with more intensity and for longer. This time I immediately told the nurses who stopped the infusion and all the symptoms stopped. When it was started again the symptoms started up again. It was slowed down and I was given steroids and was able to complete the infusion. The next time I had no problems. The time after that I had even more intense symptoms and my blood pressure went up too. They were really monitoring me by then. Also, I began to have severe stomach pains. The infusion was slowed way way down and I did complete it. It took about 6 or 7 hours to do that time. That was my last time. My doctor said that I had developed an allergic reaction to the mouse protein.

Oh and I used to drive myself there and had no problems with that. But later that day, I would get very sleepy.

I didn't mean to frighten you at all with my experience, just to let you know since you asked. You will hopefully do very well. Just let them know right away if you feel different in any way. I think that by now they really know what to look for and how to treat it better than before. Good luck!

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 7/8/2008 3:13 AM (GMT -7)   
First off, good luck with your infusion!  I hope it helps you..... I've been getting Remicade for two years, and never had a reaction.  I don't receive the Benadryl, either.  I have to take two Tylenol 1 hour prior to infusion, then 2 Tylenol after infusion.  I also get 4mg Decadron (steroid) through the IV 15 minutes prior to infusion.  The best of luck to you!  Blessings, Julie :-)
Diagnosed with Ulcerative Colitis (Pancolitis) 10/25/05
New Diagnosis of Crohn's March 2006
Asacol 3 pills three times a day
Remicade 10mg/kg every 4 weeks
Prednisone 12mg a day
Imuran just decreased to 50mg (because of Shingles)
Miralax as needed, Cortisone enemas as needed
Prevacid 30mg
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 7/9/2008 9:40 AM (GMT -7)   
I started having reactions after a year of taking it successfully.  It started about 10 minutes in to an infusion and all of a sudden I got really hot and felt like I was on fire from the chest up.  I thought I was going to pass out, so I told the nurse and she stopped the infusion.  Immediately, I had to go to the bathroom.  Dr. confirmed it was a reaction and said I couldn't continue that treatment.  Eventually tried premedicating first, going to the hospital as outpatient and getting the infusion over a slightly longer period of time, etc. but nothing worked.  Last resort was being in the hospital for 23 hours and had the infusion over 19 hours.  I almost had the reaction but it calmed down and I was able to get the treatment.  But, by then the antibodies made it not work very well and I decided it wasn't work the hospital stay every 6 weeks.  But, my reactions were always within 15 minutes of starting the infusion (except for the 19 hour infusion), so I knew pretty quickly in.  And, they always got better once the infusion was stopped.  Good luck...I hope you don't have any problems.

Crohn's Disease, Acid Reflux/Gastritis, Hypothyroidism, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Regular Member

Date Joined Oct 2006
Total Posts : 153
   Posted 7/9/2008 10:07 AM (GMT -7)   
Thanks everyone! My first infusion went well yesterday. I asked the nurse all of my questions and feel better about my decision to use Remicade.

32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 4g x four times daily and probiotics.

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