Crohn's Disease Forum » Treatment » Remicade/Infliximab » Anyone delay reaction remicide and had more infusions?

01-09-2014, 12:22 AM   #1
Join Date: Jan 2014
Anyone delay reaction remicide and had more infusions?

Hi all,

Hoping someone here might be able to shine some light on one of those 'it might, it might not be' situations.

I had infliximab nearly 8-9 years ago. They only gave my one infusion and I was so well, I took off around the world. About 2 years after that I got sick again, so they gave another one. About 8 days after the second one, I developed that lovely pain in my joints right throughout my body and was in pain for 3 days (thankfully over the weekend and was good by Monday to go back to work). They said it was a side effect and I wasn't to have it again. Regardless, I still got about another year out of it before getting crook again.

I have been on everything and we're back to discussing surgery, but in a change of heart (unsure why) they have agreed to give me another infusion and to do it every 6 weeks this time (like they were meant to the first time).

They believe that I'll react and it wouldn't surprise me but it was the best drug I've been on and I desperately want to give it another go.

So after my long explanation, my question is: has anyone here had the same reaction and been placed back on the infliximab and been okay? I'm praying the answer is yes. They have up'd my 6MP as that's meant to help but 6MP doesn't agree with me all that well

Any thoughts, advice or stories would be greatly appreciated.

Thanks in advance!!
01-11-2014, 06:42 PM   #2
Senior Member
Join Date: Jun 2013
Location: Canada

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I was on Remicade for years with no problems, went off for three years and then tried to go back on. My doc estimated a 30-40% of an infusion reaction, but was willing to let me do it if I wanted to. I did, as it had worked so well in the past.

They pre-medicated me with benadryl, tylenol and solu-medrol. I would definitely ask about this, as they lessen the chance of an infusion reaction.

First infusion was fine, halfway through the second I started to get flushed and my chest got tight. They stopped the infusion, started it more slowly and I was able to finish. I tried a third and the same thing happened. I decided no more Remicade for me.

If your doc is willing to let you try again and you are comfortable with it, I would definitely do it since it helped your Crohn's so much before. I would definitely ask about the pre-meds though.
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira, Entyvio every 4 weeks, Levofloxacin 750 mg, Vitamin D

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
02-02-2014, 12:19 AM   #3
Join Date: Feb 2014
Location: Issaquah, Washington

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I had the same reaction 8 days I had my first infusion. I had never experienced this joint pain before and my mom was very worried. It hurt to move, any part of my body! I made an appt. with my doctor because I was scared to have another infusion and he assured me that it wasn't a reaction and I had "just caught a virus" my mom and I both had a feeling that wasn't right. I'm still on it and I haven't experienced the joint pain again. I definitely think it had something to do with the remicade.
02-04-2014, 02:09 PM   #4
DCCrohns's Avatar
Join Date: Jul 2011

My Support Groups:
I developed a reaction to Remicade over time and had to switch to Cimzia and later to Humira. I wanted to get back on Remicade but my doctor was concerned giving the small reactions I was showing earlier (blotchy skin at end of the infusion time, itchiness in the throat, etc.). They ended up ordering a special antibody test for Remicade to confirm things (apparently only one lab in the U.S. that does it and they have to send a nurse to you). Sadly, I showed too many antibodies and had to stick with Humira.

Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara, Azathioprine (150mg/day)

Surgeries: Fistulotomies & Seton Placements (9/2011, 1/2013 & 8/2013); Advancement Flap (12/2013); Temp Loop Ileostomy (7/2016); Fistula Repair w/ Gracilis Muscle (9/2016); Fistula Repair (12/2016); Seton Placement & Stem Cell Harvesting (4/2018)

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Anyone delay reaction remicide and had more infusions?
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