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Starting Remicade


Sat, November 20, 2010 3:22 AM

Hey all! Im starting Remicade this Sunday for the first time to treat my Crohns disease. I have resisted it for a couple of years now, but my new GI doc recommended it again. I would say my overall Crohns tends to be mild to moderate, however I have peri-anal issues which bumps me into a different category the doctors say.


Anyways thought I would join this forum to receive some support, need to hear from those of you on Remicade and hear any tips and such.

Nervous and hopeful,

Kurt

FPO godsidekurt
Joined Nov 20, 2010

Wed, November 24, 2010 9:58 PM

 Reply posted for godsidekurt.

Had my first infusion about two weeks ago. Scheduled for second on Monday. Had great results, a bit too great in fact. Having uncomfortable constipation since infusion. Doc recommended miralax so been using it daily this week and is providing relief. So strange to go from a flare to the opposite extreme in such a short time frame...

FPO simpsonmh
Joined Nov 24, 2010

Sun, November 21, 2010 12:34 AM

 Reply posted for godsidekurt.

I have been on Remicade infusions every since I got diagnosed 15 moths ago. I do 600 mg every 6 weeks. I was every 8 weeks but I was having break through bleeding before 8 weeks was up so they bumped it up.

I think its great. I get my done at my doctors office there is an infusion room. I set in a recliner for about 2 1/2 hours and have them do it. I have never had any side effects go wrong. Tylenol and IV of Bendrayl before they start the actual infusion.

I always bring my portable DVD and ear phones to pass the time while doing it.

I will say this though. I am not sure what symptoms you are having right now but after the 3rd or 4th treatment I was able to see if my body was needing an infusion. For me my joints and muscles will start to fill flu-like, bleeding starts, extra bowel movements and sometimes fever. Thats how I know I will not be able to wait the full 6 weeks or not.

Good luck and keep us posted on how your first time went

Jamie

FPO jamrob02
Joined Nov 19, 2010

Sat, November 20, 2010 4:28 PM

 Reply posted for godsidekurt.

Hey, good luck with the Remicade...hope it works for you.  I was on it for 3 very good years (I have UC 27+ years) and then had a delayed allergic reaction.  (I was also on a higher, more frequent dose.) 

In my experience, it was good to take the premeds, at least for a while until you find out how you tolerate it.  The premeds usually include benadryl, tylenol and solumedrol(sp?) to help with any reactions.  After a few times, I stopped the benadryl since it makes you so tired, and just carried it with me for an occasional rash.  That was one of my few side effects, including fatigue and some other minor things.  Also, take something to read or do.  There are usually tv's, but you have about 3 hours! Most of all...relax and good luck!!  Hope it works for you.

Shelly

FPO smiller68
Joined Dec 3, 2008

Sat, November 20, 2010 4:27 PM

 Reply posted for godsidekurt.

Hey, good luck with the Remicade...hope it works for you.  I was on it for 3 very good years (I have UC 27+ years) and then had a delayed allergic reaction.  (I was also on a higher, more frequent dose.) 

In my experience, it was good to take the premeds, at least for a while until you find out how you tolerate it.  The premeds usually include benadryl, tylenol and solumedrol(sp?) to help with any reactions.  After a few times, I stopped the benadryl since it makes you so tired, and just carried it with me for an occasional rash.  That was one of my few side effects, including fatigue and some other minor things.  Also, take something to read or do.  There are usually tv's, but you have about 3 hours! Most of all...relax and good luck!!  Hope it works for you.

Shelly

FPO smiller68
Joined Dec 3, 2008

Sat, November 20, 2010 2:25 PM

 Reply posted for godsidekurt.

Hey Kurt,

I was on Remicade a few years back, I was only on for about a year because it stopped working on me.  That is the only reason I stopped, while it worked it worked really well and I never had any negative side effects.

best of luck

 

 

FPO antonyde
Joined Jan 11, 2009

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