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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Allergic Reaction to Remicade


08-18-2009, 10:05 PM   #1
mharvey90
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Allergic Reaction to Remicade

So today I had for 4th Remicade infusion (since starting up again- I had 3 doses of Remicade about 7 years ago as well.) My first infusion a few months back went great- I felt amazing afterwords. During my second infusion I had a little bit of a reaction- I got really nauseous, vomited, and had tremors and cold sweats. However, my doctor decided to finish the infusion because it wasn't severe and he wasn't positive it was a reaction to the Remicade- it could have been something else. My third infusion went great again- no reaction. Today I went for my 4th one and got an extremely severe reaction, I seriously thought I was going to die. I was feeling perfectly fine, and all of a sudden within 30 seconds I could not breathe whatsoever. I felt like my chest had just completely closed in on itself and I could not get any air into my lungs. My face went beet red and my face and hands and feet were tingling. It was so scary, three doctors rushed into the room, I had to get oxygen and IV benadryll. Within a few minutes after stopping the Remicade and getting the oxygen and benadryll I felt a lot better. But it was seriously on my top 5 list of scariest things to ever happen to me. Just wondering if anyone else has had allergic reactions to Remicade, because I hear it's pretty rare, especially since I only reacted to 2 out of the 4 infusions.
08-19-2009, 08:02 AM   #2
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Good god, girl! That sounds scary

I'm on Humira, decided to try that instead of Remicade. Did talk to my GI re: Remi first though. He said that b/c it's made w/mouse DNA (something or other), it's more likely to cause a reaction, rather than Humi, which is made w/human DNA (is it actual DNA? I can't remember exactly - sorry, still early).

Because you had such a severe reaction, have you thought about switching to Humi or something else?
08-19-2009, 09:10 AM   #3
mharvey90
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Yeah, the remicade is made with mouse proteins, which some people have reactions to. And yep, I am switching to Humira, just as soon as my insurance company approves it.....which hopefully will happen!
08-19-2009, 09:27 AM   #4
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I haven't had any reactions, but they give me allegra and tylenol before I start each infusion.
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08-19-2009, 11:40 AM   #5
mharvey90
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yep, i've always taken allegra and tylenol before mine too!
08-19-2009, 09:03 PM   #6
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Wow - very scary. I'm glad you are okay.
I have wondered what would happen if I had a reaction because they don't keep the blood pressure cuff on with an alarm or anything, and they aren't just sitting there staring at me. Did you call for someone? How did they know you were reacting? Sometimes I nap during mine too, what if you are sleeping and react?

Good luck with your Humira, I hope it gets approved and you do really well on it!
08-21-2009, 06:01 AM   #7
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i've had an allergic reaction too, during my second infusion
i've always taken allegra and tylenol before mine too!
after feeling better they gave me allegra and tylenol again and finished the infusion
then, from the third infusion they decided to make allegra and tylenol twice before starting the infusion and i had no more allergic reaction
08-21-2009, 01:44 PM   #8
mharvey90
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MBH, where I get my infusion is at my doctor's office- in a small room with no more than 3 patients receiving an infusion at a time. There is always a nurse in the room. When I reacted, only one other patient was getting an infusion and the nurse of course was in the room, so it was an immediate response luckily!
04-18-2011, 08:38 PM   #9
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This thread just came up after I searched for allergic reaction to remicade. My doctor has proposed that I go on Remicade. This is going to be such a tough decision. Is it worth it?
04-18-2011, 09:41 PM   #10
Mountaingem
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This thread just came up after I searched for allergic reaction to remicade. My doctor has proposed that I go on Remicade. This is going to be such a tough decision. Is it worth it?
For me it was totally worth it! I had sooo many fistula/anal issues it practically kept me in the bathroom most of the time, totally interfering with my life. Then I had so much inflammation for so long I developed early Stage colon cancer. After that scare I was ready to try it.

Since going on Remicade I live a much better quality of life, though everything's not perfect I've felt better than I have in years. Looking back I regret waiting so long.

Of course this is a very personal decision, I totally get it. You'll know when and if you're ready. Just wanted to share my experience, I hope this helps, Best wishes!
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04-18-2011, 10:08 PM   #11
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Hi From Maine

On a run up to my first bowel resection, my Gastro had tried everything he had in his little black bag to shut down my Crohns, i.e. Asacol, Pred, Imuran, and several I have forgotten. I had all the faith in the world that he was doing his best to find the right cocktail of drugs that was the most effective for me. Nothing seemed to work except the Pred and I kept climbing the ladder of remission and on my return to 10 mg, the Crohns always returned with a vengeance. Finally, he decided to treat me with a Remacaid infusion. I had to travel 40 miles to another hospital for the IV.
It took about an hour and all the while they kept coming in and asking me how I felt and checking my blood pressure. At the end of the infusion, they kept me for a short while and sent me on my way.
About 2 weeks later on my follow up, I told my cd that there was no change positive or negative and that was that. I continued with my Pred and my many Colonoscopies until a section of my large bowel was so strictured, he advised surgical removal because the problem seemed centered in a one foot section of my colon. About 30 days after the surgery, old faithful returned and so did the high level of pred to try to shut down the Crohns.
My CD suggested that another round of Remacaid might work and so I had another infusion. There didnít seem to be any improvement by my 2 week follow-up appointment, back to the Pred. A week later while at home, my joints started to ache, mostly centered in my arms and hands. I just didnít feel good so I went to bed early in the evening. I felt like I was coming down with the flu. My wife was going out for awhile and I asked her for a glass of water. My muscles hurt so bad, it took both hands to hold onto the glass. I spilt some of the water from shaking so badly.
I heard my wife getting ready to leave so I got out of bed and walked down the hallway to see her off. The next thing I remember was seeing my wife looking down at me; I had passed out and hit the floor like a rock. An ambulance took me to the local hospital and they admitted me for three days and pumped me full of steroids to stop the reaction. I ended up with a bruised eye socket, a busted lip and a realization that I am allergic to Remacaid. I was never allergic to anything prior except Polycillian. I have read many posts of Remacaid usage and all with minor reactions, nothing that wasnít manageable with salve for a rash and Tylenol for fever or headache. The human body is a marvelous thing but I guess we are all very individual under the skin. I think the good definitely out weighs the bad when it comes to Remacaid. The thing that got my attention was that the reaction didnít happen until three weeks after the infusion. Pred was and is my only salvation against Crohns. I have been in remission sense the removal of my entire large colon. Surgery has had the CD at bay sense 2006. Its been five years and mostly symptom free. Bob E - Maine
04-19-2011, 10:18 AM   #12
KayleighMeek
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I had exactly the same reaction 6 months after starting. The nurse started my infusion and she walked outh the room luckily this was one of the occasions my boyfriend could come with me. Within two minutes I turned and sai to him I cant breath he got up and by the time he came out I had passed out in my chair then they pushed the crash button and had people running in. I started to have what looked like a fit, I don't remember any of this lol. I came round I was so hot and sweaty, had really bad back pain and breathing still wasn't good. I am now on humira but this doesn't seem to be working. Remicade was still the best medicine I have been on and gave me 6 months of feeling the best I have done in a long time, I wish I could go back to it but oh well
04-19-2011, 11:42 AM   #13
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I started getting BOILS from it for a while, one on my tummy and one on my face near my eye! After that one my Dr made me go off of it for a long time, but I am back on it now and doing fine.

Even though the risks are scary, I would still recommend Remicade to anyone who hasn't tried it.
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04-19-2011, 03:09 PM   #14
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A number of people on this forum have had bad reactions-vonfunk and Penn come to mind-that's why I think it's a very individual decision. There are no easy choices with this disease, that's for sure!
04-19-2011, 05:09 PM   #15
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Hi guys, I hope I didn't deter anyone from trying Remacaid, like I said over-all, most folks have a positive result from its usage, I just didn't. We all have to take control of our health issues, its too important not to. I wish we all had a book that would tell us exactly what will work and what will not. Maybe some day they will have a genetic test that will do exactly that or better yet, find a cure for Crohns and IBD. If you listen to TV commercials about new drugs, they always list possible side effects, some sound more threatening than the reason we would be taking the drug in the first place. I know that I now approach all new prescriptions with a bit of caution until I have been on the stuff for a reasonable length of time. I wish that the Remacaid had worked for me because I hate Pred and its side effects. One day at a time and best of luck on your journey fighting these darn diseases. Bob E - Maine
04-20-2011, 09:45 AM   #16
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I imagine the doctors and nurses are well trained in administering the Remicade but I wonder if they are giving you the infusion too quickly? I'm new to Remicade myself, 2 infusions under my belt, but from the time the IV is put in to the time the little machine beeps that they're done I think it takes between 1.5 to 2 hours. They mentioned that if they were to administer it too quickly that's when I'd be likely to have an allergic reaction.
04-20-2011, 11:50 AM   #17
Mountaingem
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I imagine the doctors and nurses are well trained in administering the Remicade but I wonder if they are giving you the infusion too quickly? I'm new to Remicade myself, 2 infusions under my belt, but from the time the IV is put in to the time the little machine beeps that they're done I think it takes between 1.5 to 2 hours. They mentioned that if they were to administer it too quickly that's when I'd be likely to have an allergic reaction.
I was thinking the same thing-when I first started Remicade I would get that shortness of breath and a flushing feeling, but they would slow down the IV and watch me closely. I've been on it about a year and still it takes 3 hours-1/2 hour of fluids, followed by 2 hours of infusion, finished with another 1/2 hour flush of fluids.
10-10-2011, 01:03 PM   #18
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I have been on remicade for Crohn's for 7 years with amazing, life-changing results, and just had my first allergic reaction last week. Bright red flushing and itching of the infusion arm. They gave me IV benadryl. I am a nurse and had NO idea that IV benadryl had such a potent, almost narcotic effect... wow!

They are going to start premedicating me; and I hope I can squeeze out another several years with my "joy juice"!
10-14-2011, 10:41 PM   #19
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I imagine the doctors and nurses are well trained in administering the Remicade but I wonder if they are giving you the infusion too quickly? I'm new to Remicade myself, 2 infusions under my belt, but from the time the IV is put in to the time the little machine beeps that they're done I think it takes between 1.5 to 2 hours. They mentioned that if they were to administer it too quickly that's when I'd be likely to have an allergic reaction.
Definitely. They started it too quickly for me on my 3rd infusion and I had a mild anaphylactic reaction (throat closed up and had trouble breathing), which I alerted the doctor about right away and he stopped the drip for 15 minutes so that I could get back to normal. He then re-started the drip at a much slower rate. I've had no issues since then and Remicade has been working well.
10-19-2011, 07:07 PM   #20
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Scoutfinch, I had a very similar anaphylactic reaction several years ago. I had stopped the Remicade, but later found out the infusion lab had not pre-medicated me and I had always been pre-medicated before. When Humira didn't work for me, I went back to Remicade and so glad I did! I haven't had any problems with it since I get pre-medicated at least 15-20 before starting an infusion. We also start the infusions very slowly and stair step up about every 20 or 30 minutes. I hope it continues to work so well! It's so amazingly fast after the infusion when I start to feel a huge difference.
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Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
10-19-2011, 08:25 PM   #21
lostpanda
 
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Scoutfinch, I had a very similar anaphylactic reaction several years ago. I had stopped the Remicade, but later found out the infusion lab had not pre-medicated me and I had always been pre-medicated before. When Humira didn't work for me, I went back to Remicade and so glad I did! I haven't had any problems with it since I get pre-medicated at least 15-20 before starting an infusion. We also start the infusions very slowly and stair step up about every 20 or 30 minutes. I hope it continues to work so well! It's so amazingly fast after the infusion when I start to feel a huge difference.
Hi Sarah, both times I was infused with Remicaid, they didn't pre medicate and the team of Gastro Dr's were well versed on this medication. Glad you are faring well on the drug and good health to you in the future. Its late fall here in Maine and winter is just around the corner. Bob E from the foot hills of Maine.
10-19-2011, 09:40 PM   #22
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A number of people on this forum have had bad reactions-vonfunk and Penn come to mind-that's why I think it's a very individual decision. There are no easy choices with this disease, that's for sure!
Yes, you are right mountaingem...I was reacting to it pretty bad, if affected my limbs and Jaw. Pretty scary, and never been in so much pain. But my reaction was rare.
03-14-2013, 01:23 PM   #23
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Hi.
I had my 2nd remicade infusion today and had a reaction about 2 minutes into the iv starting. Lips swelled, face bright red, couldn't breath. They stopped drip, gave poriton and more steroid and was going to give oxygen but I recovered almost straight away. I felt light headed so they waited 30 mins then restarted drip slower. You say you were told it was rare for a reaction. Well just after I had restarted my drip a man came in (also upto 2nd infusion) and had a reaction, same as me and also chest pains. He got oxygen, piriton, more steroid, waited 30 mins and restarted. We both got the end of our infusions so are being given double steroid from now on.
The nurse said you are most likely to have a reaction on your second one which is prob why we both reacted.
It was a very scary experience for me as I felt I was about to black out. Also a scary experience for my mum who comes to all hospital appointments with me as I am 17 y/o and don't think I could have done any of this without her
03-15-2013, 10:14 AM   #24
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hi Nellie,
well that was a scary experience. thanks for bringing up this thread again. its important for newbies to know what can happen if they react.
ju
08-12-2014, 06:19 PM   #25
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Today I had my 5th or 6th Remicade treatment and for the first time I had an allergic reaction to Remicade it wasn't as severe as yours was I could still slightly breathe but as u said my chest was very right and I had trouble breathing through my nose and mouth. They gave me some liquid Benadryl as well which helped out a little with the chest tightness and it put me to sleep within 10 minutes and my doctor continued the Remicade at a slower transfer and after the Benadryl was taking over I would wake up for a few minutes every now and then but felt not much better. And then finally I was awoken when the Remicade was done and felt a lot better but my chest was still slightly tight. I think I am going to stay with Remicade for now but my doctor made the times when I get it shorter from every 8 weeks to every 6 weeks. Any thoughts? And this is my first time posting anything on this forum.
09-27-2014, 06:29 AM   #26
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Scary stories here. I've heard the recommendations for Tylenol and antihistamines. Has anyone else found anything that seems to help minimize reactions? (Sleep? Exercise? Eating?)
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