Failed Remicade, UGH

[aliciars]

So today was to be my first infusion of Remicade. I was so excited as I've gotten no where in my last year of treatment. If anything, I've been progressively getting worse. A lot of fears and hopes were riding on today.

Get the to the hospital, take 3 pills - I don't know what they were, except for the benedryl. Got an injection of corticosteroid. Waited an hour to start meds. (my order might be off - I don't exactly remember).....within 10 minutes of starting the Remicade my face was covered in hives and they were starting on my legs, arms, and chests.

I am so bummed. I wanted to be another Remicade success story. Doc is talking surgery and I am so not there yet. Still not sure the imuran isn't starting to work....oh please imuran, start working.

Anyone ever start like this and try again and have success? Or is this an obvious sign I should not be on remicade? Nurse said I got 3 cc's at most and reacted like that through the pre-meds. UGH UGH UGH.

Thanks for letting me vent.

 

[Mike_in_IL]

I am so sorry to hear that you had an allergic reaction to the Remicade...unfortunately, some people just do while others don't. Ironically, I just posted a new thread a couple hours ago asking about whether or not Remicade could cause itching and hives...Long story short, I've been on it for nearly a year without any issues (works wonderfully), however, about three and a half months ago, I started developing hives which got worse over time. I've been on a gazillion antihistamines, which have helped some...but after my last infusion four weeks ago, the hives came back worse than ever. I also started itching horribly all over my entire body. I was put on a high dose of Prednisone, which did it's job...the problem is, now that I've almost weaned off it, the severe itching is starting to come back. Ugggh...I really believe I'm allergic to this drug even though it's working to control my Crohn's!

Anyway, if you reacted that badly to it with pre-meds, then it probably isn't safe for you to try it again (it could get worse next time). A friend of mine who has Crohn's started developing severe allergic reactions to the Remicade after her first few infusions and it never got better. She couldn't breathe well, had rapid heart beat, and her face was flushing badly. She finally stopped and switched to Cimzia, which she had had much better success with. That is probably what I'm going to go on next if my issues don't clear up by the time of my next infusion.

Talk to your GI doc about Cimzia or Humira if you're dead set against surgery...they're similar TNF blockers like Remicade and people often times have success with them if the Remicade doesn't work.

Good luck,

Mike

 

[Soybean]

Aww aliciars, I'm sorry to hear that you reacted badly to the remicade Has the Dr given you any other options apart from surgery?

Soybean xx

 

[DMS]

Sorry that you had a reaction to the remicade, that just sucks.

I'm curious how long you've been on the imuran? My son's been on almost 4 months now and it's just started to work in the last 2 to 3 weeks. I've heard others have taken up to 6 months.

 

[aliciars]

Well at this point we're going to just keep waiting to see what happens. Freaky enough, since I stopped humira & the Canasa I'm have the best stools with the least amount of blood since I can remember???? But I'm achey & have started with more pain. Ugh!!

My first dr put me on imuran back in Jan. But only at 50mg. My newest dr bumped me up to 150mg mid-may. So 2 months. Hoping that this is why I'm seeing changes. My new dr also said, after my last scope less than 2 weeks ago, "I don't know how she's doing this" in reference to my horribly inflamed rectum. Great news doc! Ugh!

Thanks for the responses & concern.