Remicade warning | Arthritis Information

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I don't want to scare anyone, but I would like to warn those of you that are taking Remicade.  If you take Remicade, stop taking it, and go back on again, you are at risk.  Your body will produce antibodies and when you try to take it the second time, you are at a high risk of having a serious reaction.  I found this out the hard way.  I took Remicade, in 2002, but had to stop because my rheumatologist thought it was causing me to get infections.  I later found out that my body didn't produce the antibodies it needed to fight infections and the Remicade wasn't responsible at all.  I've been taking IVIG infusions (every 3 weeks) since.  Remicade worked really well for me, so my rheumatologist suggested that I try it again.  This was in 2007.  My first infusion (in 2007) went fine, but I had a serious reaction to the second one.  I went into anaphylactic shock and almost died.  It was, without a doubt, the scariest moment of my life.  After I recovered, my rheumatologist had me call Remicade to tell them what happened.  The nurse, at Remicade, said that this can happen if you take Remicade a second time (after stopping for a while).  I just wanted to warn those of you that are taking it, because I wish someone had warned me.  I don't want this to happen to anyone else.  It doesn't happen every time, but it can happen and did happen to me.  Just be very careful!

My RD and the literature that I read made me aware of those possibilities.  It's the same reaction or side effect that you can have the first time you're infused.  It sounds like the real issue is restarting Remicade after you've been diagnosed with an antibody/infection disease.  I'm surprised that your RD suggested you restart it after stopping it due to an antibody/infection issue and receiving infusions for it.  Why did he think it would work any differently or you wouldn't get infections the second time you started it?  Anaphylactic shock is a horrible thing to go through.  I'm glad you're better.  Do you still have the antibody/infection issue and are you being medicated for it?  Did you start any other biologic?  LindyMy RD had no idea that this was even a possibility.  I was the one that told her, after speaking to the people at Remicade.  If I had known about the risks involved, I would not have even considered trying the Remicade, for a second time.  You would have thought that my RD would have been aware of the risks involved. 
 
After this horrible experience, I was too afraid to try anything else, for a while.  I went back on Enbrel and have been on Enbrel, until the end of April.  I finally got up enough courage to try something new and just started taking Orencia, last Thursday.  I was so nervous during my first infusion.  I was so afraid that it would happen all over again.  Fortunately, I got through it fine.  I just had a couple minor side effects (headache, nausea), that they have listed in their literature. 
 
Thanks you for your comments!
Hi Renee, so glad that you did better with Orencia.  It's scarey starting any new med but even more so for you.  I had to stop and restart Remicade 4 different times in 18 months and was always fearful about restarting.  I had to stop Humira in Feb. and I'm restarting on Mon. and I have all of those same fears back.  It's like taking it for the first time.  Take care.  LindyThat's a scarey thing!!  wow... I am glad you are okay.  Good luck w/ the Orencia.. and glad to hear about your decision Lindy.. wishing you both the best w/ your regimens!!
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