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Remicade Reactions...?

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Crohn's Disease
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Posted 5/7/2011 1:48 AM (GMT 0)
Hi all,

I had my first infusion yesterday and I feel OK but am wondering how long does it take for people to get reactions/side effects? I don't want to lure myself into a false sense of security...

Thanks,
Marissa
Posted 5/7/2011 2:03 AM (GMT 0)
It can take even twelve days for a delayed reaction to develop.

http://www.gimedicine.com/Joomla/index.php?option=com_content&view=article&id=75:remicade-tratment&catid=36:specialnprocedures&Itemid=69

I'd suggest not worrying too much. Just relax and start looking for positive effects, though these might take a few weeks to take hold too. You'll know a reaction, if it happens.

Ivy.
Posted 5/7/2011 3:04 AM (GMT 0)
For me, my Side effects began about the 2 year mark. It basically stopped working,

That said, Remicade put my Crohn's into remission in my guts. The 10-15 trips per day to the bathroom stopped and I began to have the first formed stools in over 20 years.

Remicade got me on the path to a better quality of life. I was disappointed when Remicade began to be less effective on my arthritic problems. Since then, switching biologics has kept my guts in check and improved my ankylosing spondylitis for the most part. My health is not perfect but it is a heck of a lot better than is was before Remicade.

Hope it helps you as much as me!
Posted 5/7/2011 5:17 AM (GMT 0)
Remicade worked incredibly well for me... while it worked. But I never had any reactions what so ever.

And also for people that DO have reactions or for people that restart remicade...you can have reactions and Ive heard a few IBD specialist say that taking 40mg of prednisone the 2 days prior an then 60mg the day of and some benadryl will completely calm down any reactions you might have...so you might want to ask your doctors about doing that regimen if you do start to notice side effects.

I do remember when I was on Remicade that the day of the infusion and the next day I would feel like I had unlimited energy to go and do anything that I wanted. and it was almost completely immediate after the infusion so I always looks forward to my infusions, whether I was feeling bad or not I loved that energy boost it gave me!
Posted 5/8/2011 3:25 AM (GMT 0)
not that it will happen to you but, my first few infusions of remicade were fine and then around the third or forth infusion i started having reactions. i have since realized that i am very sensitive to remicade but the reactions are well worth it.
Posted 5/8/2011 3:31 AM (GMT 0)
After my 4th infusion I got a rash on legs and arms. Before my 5th they gave me 40mg prednisone and Benadryn IV (darn near passed out from the Benadryl) but no post infusion rash. What the next infusion will bring... who knows!
At present the benefits outweigh the side effects, five hour infusion appointment and COST!
Posted 5/8/2011 3:57 AM (GMT 0)

Snivler said...
Before my 5th they gave me 40mg prednisone and Benadryn IV (darn near passed out from the Benadryl) but no post infusion rash.

haha, i get IV benadryl before every infusion and i practically pass out before they even finish giving the whole dose.
Posted 5/8/2011 6:48 AM (GMT 0)
I recently had my fifth infusion and about four hours after I got home, my entire body hurt. I couldn't raise my arms because it felt as though my arms were going to explode. My legs felt as though someone gave me the worst dead let of my life. This later for 3 days and went away.
Posted 5/9/2011 3:35 AM (GMT 0)
Ughh...I'm so scared and sick of side effects from Crohns meds...I still feel fine but it's only been a few days since my first infusion...I'm praying so hard that nothing bad happens. :(
Posted 5/9/2011 3:37 AM (GMT 0)
STOP WORRYING! :-)

As I said, you'll know if you have a reaction. Worrying about it isn't going to change the outcome :-).
Posted 5/9/2011 4:15 AM (GMT 0)
That is true...it won't change the outcome. After all, I don't think any drug could have as many negative side effects as Prednisone lol...

Posted 6/12/2011 5:57 AM (GMT 0)
Hi, new to the forum here... :)

I had 4 infusions of Remi, and a reaction to the fifth (they doubled my dose on that one). For the first 4, it was just muscle aches for 2 days, but other than that, I felt fantastic, and my BM's dropped to 1 or 2 a day, no matter what I ate. On the 5th dose, I got 1/4 of the way through the bag and started feeling really hot, then broke out in hives. They had to push IV Benadryl, and it took 2 hours for everything to fade, but my doc said no more Remi after that.

From my understanding of it, a reaction can come out of the blue, due to your body developing an intolerance for the protein used to make the Remi. Don't worry about it though, it seems that if there is a big reaction, it would happen while you were still getting the infusion, where you have immediate help.
Posted 6/12/2011 3:44 PM (GMT 0)
my nurse told me it can happen anytime... for me it's the itch..oh good lord the itch...I now get pre medicated with benadryl, and i pop a few the next day and it seems to mellow out..I use to get bad headaches the day after but that has seemed to mellow out..( going for my 6th in aug) I wouldn't worry to much about it...( just adds more stress to our stressfull lives) I guess it is different for everyone. I did notice my bleeding started to go away after the 4th and now...NO MORE BLEEDING>>>WOOOOOO HOOOOO! yea hoo for remi!
Posted 6/12/2011 5:29 PM (GMT 0)
I had Benedryl IV infusions and was okay till a few years in and started having reactions and had to stop.
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