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WoW had reaction to cade

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Crohn's Disease
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Posted 5/9/2008 5:28 PM (GMT 0)
i am still here in the infusion ctr which started at 8am (by the way im typing w/one hand )

not even 5 min into it i started to feel like i couldnt breath...my face was getting like fire...my back hurt when ever i did get a breath ...honestly i thought i was going to die

oh,yes they did give me pre meds first

they gave me oxygen and turned the cade off ...called the doc w/my vitals

we waited about an hr till all the symptoms left and started again really slow - so its taking longer

i never thought a reaction would be so bad!

so far so good .. cant say i am not concerned about getting a reaction still after i leave and it is all in my system

well,back to doing nothing
Posted 5/9/2008 5:36 PM (GMT 0)
misterie, my reactions were the same as yours, only they wouldn't allow me to continue the treatment after having a reaction. So, we would wait 6 weeks and try again. Premedicating didn't help, going to a hospital to have it done over a longer period of time didn't help either, until we got up to a 19 hour infusion. At that point, I started to have the reaction, but then it went away and didn't get as bad as usual. Still, didn't think it was worth it to be hospitalized for 23 hours every 6 weeks, especially since I developed antibodies and it didn't work well anymore. I hope your reactions don't continue to worsen, like mine did. Good luck
Posted 5/9/2008 5:57 PM (GMT 0)
Misterie, I did the same as you, they stopped, gave me a whole bunch of drugs. After about 15 mins, they asked I wanted to try
again, so I did. Within the first few seconds of the IV being turned back on, wham straight into anaphylactic shock. No more remi
for me.

Don't forget, if your reactions get worse, you could ask to try Humira. I had no reactions with that!! Good luck hun!!
Posted 5/9/2008 5:59 PM (GMT 0)
Zena right now i am 4 hours into it since they slowed it down i havent had any other reactions
but i am concerned it could still happen after i leave the hospital ( thats where i get the infusions )
did you get reactiions afterwards also? if so what were they ?
Thanks
Posted 5/9/2008 10:34 PM (GMT 0)
My reactions afterwards were severe leg cramps in my calfs for 2 days after, then a week after, debilitating joint pains in almost every joint in my body.  I hope that you are ok now.

Posted 5/9/2008 10:43 PM (GMT 0)
Hi, I hope things went better when they did the infusion slower. did they give you bentral?
Posted 5/10/2008 12:00 AM (GMT 0)
Thanks everyone ...
Teddybear they gave me benedryl and some kind of steroid before the cade was started ...

Since I have been home I have felt lightheaded when ever I get up and for a while my heart felt weird .like it was racing ...

Im not feeling that way right now....although am sitting : ) and not moving ...

Well, Its over for now and for that I am really glad !
Posted 5/10/2008 4:36 AM (GMT 0)
When I had my reaction to Remicade (hives in the mouth) they gave me Benadryl, which did nothing, then a steroid dose. That stopped the reaction, they were able to finish the infusion without further interruption. However the infusion did not help. Typically I'd see a response 3 days post infusion. That time it was as if I never had an infusion...

Yes, if the problems continue, definitely ask about Humira!
Posted 5/10/2008 11:46 AM (GMT 0)
I had 4 remi infusions and then reacted just like you -- tight chest and red face. They didn't continue it. Tried again six weeks later. Reacted again at the very start. No more remi! Then tried Humira. My Doc said to start with one pen instead of the normal 4 (loading dose). Smart man! Several days later I had whole-body hives. They gave me steriods but the drug stays in your system for 10-20 days. The hives kept "blooming" until day 14.

Clearly my body doesn't like either of them, and they drugs are similar. Others can tolerate humira and just react to the mouse protein in remi (humira is all human). I hope you don't have any other problems!!
Posted 5/10/2008 4:53 PM (GMT 0)
I had the same reactions as you did except I also had tightness in my chest and severe abdominal pains along with it. It was so scary feeling like you could not breathe and getting so hot like you were on fire. I had it happen about 4 times in a row with increasing symptoms before they said no more. On Humira now. No reactions. Excellent results.
Posted 5/11/2008 3:27 AM (GMT 0)
Nurses notice red face on me several infusion prior to my last. I felt a funny but tried to ride it through. Last infusion didn't help at all. I switched to Humira after 5 years on REMI.
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