Should I be nervous about going on remicade again???

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fistulagal
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/7/2008 6:08 PM (GMT -7)   
I am considering going on remicade again. I haven't taken in years. I was actually the 1st patient to receive it at the hospital where I go. I had it for a rectal vaginal fistula. I currently have some pesky fistuals that won't close. I actually had one close june from a plug, so I am hoping that it stays closed. I don't know why I am so nervous about going on it again, I just heard that since I actually had it there have definately been adverse effects and I really don't need anymore issues at this point. Has anyone had any issues with it, like cancer and that type of stuff? I was able to handle it the times I did have it with out any reaction, but who knows this time. I am on 6mp currently. Any info would be helpful. Thanks
Fistula Gal
Sick and tired of being sick and tired
 


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/7/2008 6:19 PM (GMT -7)   
Has the doctor discussed giving you medications prior to the infusion to prevent reactions. Given the long length of time between infusions, it would be much like starting over. These days it is common to premedicate patients with Benadryl/Claritin and Tylenol before the first infusion.

I took Remicade for 2.5 years. My gut went into remission after 3 infusions. First time in 25 years I could eat almost normally. I had no problems other than Remicade stopped working and towards the end I would feel "flu-ish" after the infusions. The first 2 years were a breeze. I do not have fistulae so can't comment on that aspect.
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CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


JustNerves
Regular Member


Date Joined Jun 2006
Total Posts : 33
   Posted 1/7/2008 6:39 PM (GMT -7)   
I have been on Remicade for 6 years and have never had any issues. Sometimes I feel tired after an infusion but I think that is just because I have been sitting around for 3 hours.

CheerDad
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Date Joined Apr 2004
Total Posts : 2284
   Posted 1/7/2008 6:47 PM (GMT -7)   
I have been on it for 4 years without any problems. That is not the case with everyone, but they are the exception not the rule.
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chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 1/7/2008 6:48 PM (GMT -7)   
I wouldn't be nervous about the adverse effects you mentioned, I might be nervous about a reaction to it since you have had it before. But since it was so long ago, I would give it a try again. I always take benedryl and tylenol 1/2 hour before my infusions. I might also ask your dr. about taking pred for a few days before and after also. I have been on it for over 3 years now, and I haven't had any issues with it, and I am receiving a double dose every 8 weeks. Good luck!

cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/7/2008 7:05 PM (GMT -7)   
if you do it again, they will definately give you prednisone in addition to benadryl and tylenol. i stopped remicade for about 8 months and had a few issues returning to it. 8 months was a tricky amount of time because it allowed my body to develop antibodies to it. i think either the shorter you are away from it or the longer...the better. does that make sense?
 
 
you're not going to get lymphoma from one infusion...that will be several infusions. my problem was neurological, and that can happen after a single dose. but that is also extremely rare (even though it happened to me, i still think its rare enough to assure you that your chances are very low).
 
try again, they should monitor you every 15 minutes and if your temp rises or you start to develop hives/rash..they can stop it.
 
good luck

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 1/7/2008 7:10 PM (GMT -7)   
I was on then off Remicade and have now been back on it since Oct with no issues. I take benadryl and tylenol 30 mins before and then once I get there, they give me solu-cortef in my IV before they start the actual Remicade infusion. I haven't had any problems..but everyone is different. GOODLUCK!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


fistulagal
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/7/2008 7:23 PM (GMT -7)   
Thanks for all the feedback. I will see what my dr recommends tomorrow when I see him. I just get nervous about things with small children at home na hte adverse effects that medication can cause.
Fistula Gal
Sick and tired of being sick and tired
 

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