Remicade question

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/6/2008 7:53 PM (GMT -6)   
Has anyone ever been through the following: right after Remicade was first FDA-approved for Crohn's, I had one infusion of Remicade because that is all that was approved at that time. I am now starting on Remicade again tomorrow. I am concerned about a possibility of a higher rate of infusion reaction (Remicade is a biologic after all). Can find no information concerning this at all and would like to know if anyone else has had either good or bad experience.

Forum Moderator

Date Joined Nov 2003
Total Posts : 7056
   Posted 10/6/2008 10:08 PM (GMT -6)   
Welcome to Healing Well, slm0217! I'm glad you found us. I have not had any personal experience because I started on Remicade and followed the recommended dosing now prescribed. From what I have read, those that have had only a few infusions and then stopped, are more likely to develop infusion reactions when they receive Remicade at a later date. These reactions can be forestalled by pre-medicating the patient before their infusions. Usually most people are premedicated before the first infusion anyway so this is not something outside the norm. Most people are given Tylenol and Benadryl orally. One time I was given Zyrtec the evening before and then Tylenol before the infusion. People that have had reactions during the infusion are sometimes given prednisone for a day or two prior or IV steroids right prior to the infusion. I hope this info helps.
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 Aug 2008
Total Posts : 320
   Posted 10/7/2008 3:42 PM (GMT -6)   
I had one infusion 3 years ago.  I did get a reaction so we stopped.  Last May I got pretty sick so we agreed to try once more.  It was the single worst experience in my life.  I will never allow that poison in my body again.  I'm not saying this will happed to you.  Only htat I cannot tolerate it.

150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
When I am weak, then am I strong

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 10/7/2008 3:51 PM (GMT -6)   
I was the first person at the hospital I go to, to get Remicade when it was FDA approved, then I got 2 more infusions about 6 - 8 months apart. Nothing like what is currently recommended. My doctors have discussed putting me on it again, but it is a concern because I could have developed antibodies. I would have to be pre-medicated and watched. I would still go for it, if they recommended it, but at this point, I don't meet the qualifications. I think as long as you are getting your infusion in a controlled setting and are being monitored, you should be OK. You may have a reaction, but the staff should be able to handle it.

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 10/7/2008 3:55 PM (GMT -6)   
Isn't there a blood test to see if you have developed antibodies? I thought there was....but I'm not for sure.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 10/7/2008 4:45 PM (GMT -6)   
I get premeds because I have had some slight reactions. It all works out fine though. They will watch you and if you have trouble they are on top of it. They also watch me for 30 min. after. As for a test. I think they put you and a mouse in the same maze. If you get to the cheese before the mouse,,Hmmmmmm ...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/7/2008 5:07 PM (GMT -6)   
I got one infusion a couple of years ago with no problems. I was an hour and a half into my second infusion, when I started having chest pains and difficulty breathing. My body swelled up so big that I stretch marks and defecated all over myself. They couldn't get the reaction to stop and all said it was the worse reaction they had ever seen. My intestines hurt so bad, I was screaming. They ended up giving me morphine for the pain. By bedtime, I was finally able to go home. I had breathing difficulty for weeks and was still swollen all over. When I asked why I had such a bad reaction, the doc said they were suppose to pretreat me with benadryl but didn't since it was only my second infusion. My point........make sure to ask plenty of questions. Have somebody with you if possible just in case something does go wrong.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 10/7/2008 5:46 PM (GMT -6)   
I had a two-and-a-half-year break between infusions, and reacted severely enough to prevent me from having Rem again.

Apparently the risks are much higher if you have more than a two year break between infusions, and also higher if you haven't been on an immunosuppressant (e.g. Imuran, Methotrexate) between infusions).

I hope you don't find this thread too scary. Hopefully the docs will be aware of the risk and will be doing everything they can to keep you safe during the infusion.

Good luck tomorrow,

Co-Moderator Crohn's Forum.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 10/7/2008 5:49 PM (GMT -6)   
ps. You said you couldn't find much information on the net. Is this page helpful?

Remicade (Infliximab) - Side Effects and Adverse Reactions .

Co-Moderator Crohn's Forum.

Regular Member

Date Joined Nov 2007
Total Posts : 497
   Posted 10/7/2008 10:10 PM (GMT -6)   
My GI and eye doctor are considering putting me on Remicade if the Imuran doesn't work. I found out today, after being on MTX for 4 months, that it has done nothing for me, so I will just be on the Imuran, for now. I hope the Imuran works--some of these other meds scare me!
My GI did say that they have seen more success with Remicade as opposed to Humira.  Maybe I am just chicken but they scare me.  Honestly, the Imuran scares me as well.  The MTX scared me a little bit but not like these others do.  It bites that one didn't work for me. sad

Post Edited (indigosunrise) : 10/7/2008 9:15:41 PM (GMT-6)

Regular Member

Date Joined Oct 2006
Total Posts : 367
   Posted 10/7/2008 10:15 PM (GMT -6)   
Hi SLM. I'm sorry to hear you are having to face such tough decisions. One thing you may want to try is a different biologic (Cimzia or Humira) and that way not have to worry about a reaction to Remi.

Veteran Member

Date Joined Apr 2004
Total Posts : 2284
   Posted 10/7/2008 11:47 PM (GMT -6)   
I had a reaction to my infusion and now recieve 50mg of Benydrl (injectable) and 40mg of solumedrol (Prednsione) and 500 mg of tylenol. Have not had a problem since then after 6 years.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.
Please allow HealingWell to continue helping others by donating:
Dx'd with Crohn's at age 12. Symptoms since age 5, RLS, Depression, Anxiety, and down right feel yucky some days.
Learning to live with this Disease rather than be its victim after 36 years.

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, October 27, 2016 1:58 AM (GMT -6)
There are a total of 2,712,728 posts in 299,124 threads.
View Active Threads

Who's Online
This forum has 153704 registered members. Please welcome our newest member, ewfdevhoijaz.
189 Guest(s), 2 Registered Member(s) are currently online.  Details
abhi, nberg

Follow on Facebook  Follow on Twitter  Follow on Pinterest

©1996-2016 LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer