Crohn's Disease Forum » Treatment » Remicade/Infliximab » Why am I suddenly reacting to Remicade

01-01-2014, 04:42 PM   #1
KristinaEli's Avatar
Join Date: Mar 2012
Location: Jacksonville, Florida
Why am I suddenly reacting to Remicade

I'm at a loss right now. I was diagnosed with Crohn's Disease when I was 17. I'm 19 now and have been on Remicade for a year as of November. I absolutely loved it. I was doing very well on it. I've always gotten premeds of IV Benadryl and solu-medrol, and a few times the Benadryl brought my blood pressure down very low (about 60/40) but that was the only complication. I had an infusion in October that had to be stopped half way through. I broke out in hives so they stopped remicade, gave me a bag of saline and extra premeds, and after that we were able to continue with the treatment. My GI decided to double my premeds and slow my infusion down so it would take roughly four or five hours. I woke up two hours in, only a third of the bag gone, covered on hives again and short of breath. My oxygen level was down to 92%. Again the infusion was stopped, I was given more solu-medrol and some Zantac, two full bags of saline, and the hives still weren't gone. My GI was called and he wouldn't let me continue treatment. He's talking about putting me on Cimzia. I'm just so frustrated with all of it. All of the muscles in my neck and torso hurt so bad. I feel like I was hit by a truck. No one can answer me why this happened all of a sudden. We're talking about a year of no issues. I thought I found the answer to my illness. I'm starting college in two weeks. And now I feel like I'm back at square one. Has anyone ever had this happen to them? Or tried Cimzia? I'm hesitant to put another drug in to my body just to have the same thing happen again.
Diagnosed March 1, 2012 with Crohn's Disease, Uveitus,and possibly Behcet's.

Current meds:
Humira 2x Monthly

Failed meds:
Pred Forte
01-01-2014, 06:15 PM   #2
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KayleighMeek's Avatar
Join Date: Dec 2010
Location: Southampton, United Kingdom

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I was on remicade for a year when I had an anaphylactic reaction it started out with trouble breathing and by the time the nurses got to me I had passed out and was shaking. When I can round I was very hot and had awful back pain too. It could be that you have antibodies to the remicade and this has caused you to have a reaction hopefully this link will work
It seems at the end of this it still is uncertain why this happens as people have same chance of remission if they have antibodies or not. I can understand your frustration I found remicade worked the best for me too. I have tried humira and I am now on cimzia I did have a reaction to humira again after about a year and had to come off that too. The cimzia is so far ok I am still losing a bit of weight but joint pain is better and I am not as ill as I was before.
I hope cimzia works for you x
Current meds

Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
01-01-2014, 07:11 PM   #3
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Location: vienna, Virginia

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I wish you the best with the Cimzia.

Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
01-02-2014, 04:41 PM   #4
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Join Date: Jun 2011
Location: Madison, WI, USA

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It's not unheard of to develop a sudden allergic reaction to a medication after a long period of tolerance. I myself developed an allergy to Sulfasalazine after taking it successfully for Crohns for 20 years. And since then I have developed allergies to Pentasa and Asacol after only a few months. The allergic reaction each time was the same -- a bad rash and then hives -- so now I can tell almost the moment an allergic reaction begins.

Chances are you won't find a wonder drug that will keep you in remission for a lifetime. I thought I had had that with Sulfa, and it was very frustrating, if not downright depressing -- when it stopped working for me. Hopefully, you will find something that will work as long, or even longer, than Remicade did for you originally.

Good luck with Cimzia, Kristina. I hope it works well for you, and for a long time. Good luck with college, too!
Diagnosed with Crohn's Disease Oct 1982; Rheumatoid Arthritis Nov 1985; Ankylosing Spondylitis June 2015
Taking 150mg Azathioprine; Remicade, Tramadol, Celebrex
Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
01-02-2014, 08:42 PM   #5
my little penguin
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DS developed allergic reactions after 8 months on remicade.
the fact you needed solumedrol ( steroid) means you were probably reacting on a low level prior.
DS had two reactions
first one without solumedrol
so we tried again with solumedrol prior.
He still reacted.
Anaphylaxis can kill so that is why they are stopping the meds.
Sometimes they can not stop the reactions.

DS is on humira now.

good luck,
DS - -Crohn's -Stelara -mtx
01-12-2014, 03:41 PM   #6
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This happened to me too. I was on Remicade for over a year when I had an anaphylactic reaction - throat closed up, couldn't breathe, turned red. The first time it happened my doctor stopped the medication so I could recover, then started it up again really slowly. I was there for 5 hours. On my next dose, it happened again, but this time it was harder to recover - I was absolutely freezing cold and literally shaking for the duration of the drip. On the next dose, it happened again and my doctor decided to take me off Remicade. I moved onto Humira and wish I had started it years ago. It's been very effective (much more so than the Remicade) and it's much easier to administer than Remicade.

Good luck with Cimzia. I hope it works well for you. If it doesn't, try Humira. My doctor moved me onto it because it's similar to Remicade and has shown to be effective for patients who have failed Remicade.

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Why am I suddenly reacting to Remicade
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