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My GI appt after my bad reaction to Remicade

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Posted 10/27/2011 12:06 AM (GMT 0)
I seen my GI today to see what he wanted to do about my bad reaction to Remicade (swollen hands and elbows). My next infusion is next Wednesday so he wants to pre-medicate me with Benedryl and steroids via IV before the infusion. He said what I had was an early onset serum reaction but couldn't really say if that means that my future infusions would be as severe. He told me that if I have another reaction that I can no longer do Remicade and if my insurance approves it, that my next step would be Humira. But once again, he said he wasn't sure if that would work for me.

I really don't want to stop Remi. I have been feeling pretty good Uc wise and I don't want that to stop but I guess I have to take into consideration what it is doing to the rest of my body. So this next infusion will tell the tale....

eyes
Posted 10/27/2011 12:14 AM (GMT 0)
I've got my fingers crossed that the steroids and benadryl do the trick!
Posted 10/27/2011 1:12 AM (GMT 0)
I had a bad reaction my first infusion and I wasn't premedicated.  After that I was premedicated and I get it administered slow.  I only go to 65.  I went today and was there from 9-2:45.  This is normal for me.  I still get the chest pain alittle and my legs get really shakey when I am done until the next day but otherwise I am fine.  Good luck.  I hope the premedication works.  I get tylenol and hydrocrotisone. 
Posted 10/27/2011 11:41 AM (GMT 0)
I guess he wants to see if the steroids will keep any inflammation down seeing since my hands swelled up (talk about painful - phew!) and the Benedryl to prevent allergic reactions. He did mention taking Tylonel too before the infusion but I had to tell him that I take Tylonel Arthritis every day as it is (still didn't help with the reaction). What's Tylonel supposed to help with anyway?? I also take Zyrtec every night, but I guess that isn't strong enough to stem a reaction.

I'm soooooo crossing my fingers and hopes this works too. I'm not ready to give up on Remi and hopefully my body isn't either! lol
Posted 10/27/2011 11:53 AM (GMT 0)
I hope this works! I'm surprised that your GI didn't mention slowing down the infusion rate. That helped me with reactions.
Posted 10/27/2011 12:34 PM (GMT 0)
How does slowing down the rate help with delayed reactions? On the last two (well the only two) I had, the reactions didn't happen until later that evening or the next day.
Posted 10/27/2011 11:05 PM (GMT 0)
I remember that rey posted a while back about her daughter getting chest pains after Remi & her thread then got several replies about premedication before infusion. Then her daughter switched to Cimzia. I hope you can readjust this next time so as to avoid bad reactions. Bummer! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 10/27/2011 11:35 PM (GMT 0)
I'm not sure, Sherry. But slowing down infusions helped me with migraines, which I got within 48 hours of the infusion.
Posted 10/28/2011 12:05 AM (GMT 0)
I hope you don't have any side effects Sherry. It sounds like you're takign all the precautions. I am sure things will go smoothly on weds.
Posted 10/28/2011 11:25 AM (GMT 0)
I had the same thing happen to me at first and like the other posters mentioned, they slowed the infusion down which seemed to help.
Posted 10/28/2011 11:41 PM (GMT 0)
Hi Red--

I'll keep my fingers crossed for you. Remicade was the magic bullet for me, but unfortunately, I developed anti-bodies to it, so bye-bye remi. I'm scared to death of flaring again. Wisgh I had gotten this d--- colon out years ago. Oh well hindsighgt is 20-20!!

Good luck
Michigoose
Posted 10/29/2011 3:49 PM (GMT 0)
Good luck. I might have to start remi soon, been getting info on it thx.
Posted 10/29/2011 4:20 PM (GMT 0)
Hi-

I haven't been here for a while, when I signed in your post caught my eye. My daughter had a reaction after her 1st remicade infusion. She had chest discomfort that began the next day. She also had a hard time during the infusion, running fever and feeling miserable. The dr switched her to cimzia fearing these reactions to remicade . Cimzia did not work for her, and she began having uc symptoms after her 2nd treatment with it. Because the remicade worked right away my daughter wanted to try it again.

Someone on this board suggested that the benadryl that is used along with steroids to premedicate her be put in a drip instead of taken orally. It seems to have worked. The dr tested her antibodies and allowed her to try remicade again and we asked for the benadryl to go in through the iv. she didn't have any chest discomfort and has had a couple of treatments since.

The tylenol is given to avoid fever, It does seem to go up during the treatment, and the drip has been slowed down due to this and blood pressure drops.
It's not pleasant, but it is working for her and my daughter wants to stay with it for now.

I hope this helps you.
Posted 10/29/2011 4:52 PM (GMT 0)
The tylenol just helps with minor aches and pains from the remicade.  My legs get really shakey after my infusion.  I still get the chest pain and I think it is heart burn because since taking the meds for that it is really mild.  I don't know why slowing the infusion helps but it does and my doc said I can't ever have it at the full rate(I asked if we could up the rate so I don't sit there forever).  Oh well!!! Good luck!!! They gave me benedryl through my iv the first time I had a reaction and I don't like the way I feel when I take it so she suggested tylenol for me.  I get my steriods through the iv right before they start the remicade. 
Posted 10/29/2011 4:55 PM (GMT 0)
When I was on Remi I had a problem with an immediate infusion reaction, (trouble breathing) and delayed reaction (severe debilitating joint pain). They started administering the Benadryl via IV before each infusion and I never had anymore problems.

I hope this works for you. The premedicating worked great for me and allowed me to stay on it for about 6 years without any problems!
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