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Remicade Users: What should I expect?

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Posted 10/9/2007 3:38 AM (GMT 0)
I will be having my first infusion this coming Friday.  What should I expect?  How will I feel after the infusion?  Will I be knocked out and unable to do things after the infusion or will it just be like being hooked up to any type of IV and I will go home and be fine to do whatever I want?

Sorry.  I'm a little nervous.  I would like to go out with friends for dinner on Friday but want to know what to expect as to whether I will feel like doing it.

Thanks.

Posted 10/9/2007 5:36 AM (GMT 0)
I did Remicade infusions for almost 3 years. I never had any type of problems during the infusion nor right after the infusion. I used to stop at the mall on the way home from getting my infusions and go clothes or shoe shopping. On two occasions, I felt very tired the NEXT day following the infusion. I think that I possibly might have had something else going on that caused me to feel so fatigued. After my first three infusions, I did notice I had a lot of gas for some reason. After that, I never did have the gassy build-up.

If the pre-medicate you before the infusion with Benadryl, you might get sleepy from that. Since you are on steroids though, they might not pre-medicate you. I was only premedicated before my very first infusion and never after that.

I sure hope the Remicade helps gets you off the 'roids and improves your quality of life!
Posted 10/9/2007 9:37 AM (GMT 0)
Hi I have been on Remicade for over 2 years and I am in remission. It make take up to 3 infusion for you
to notice anything. I hope the Remicade works wonders for you.
TBW
Posted 10/9/2007 9:55 AM (GMT 0)

The worst part or me during the first Remicade infusion was the
anxiety of waiting for something to happen, and nothing ever did.

I take Claritin instead of Benadryl before the infusion so that is
probably why I don't get sleepy.

After my infusions I go for lunch and then shopping.
I have had 2 infusions so far, and have noticed improvement
after the first one. No urge to keep going to the bathroom,
and no more fatigue.

No luck with it closing my recto-vaginal fistula yet, but I haven't
developed anymore abscesses, so that's a plus.

Posted 10/9/2007 12:53 PM (GMT 0)
Hi My first one went pretty good was a little tired but for me it's a hour drive home and probably nerves played a part in that my other ones have gone good. Good luck and try not to stress yourself evertything will probably be fine. lol gail
Posted 10/9/2007 4:04 PM (GMT 0)
Well I made plans to hang out with my new boyfriend after my 3rd infusion.  Needless to say I had to cancel.  They had given me benadryl, just a little they said and an anti nausea med.  I was tired as hell, had my infusion at 1:00, slept till 8pm.  You may want to reschedule your plans or play it by ear.  You have no idea how you will react.  I'm not making any more plans for the infusion days!
Posted 10/9/2007 8:08 PM (GMT 0)
Thanks everyone. If anyone else has any "tricks of the trade" to share, I'd love to hear them!
Posted 10/9/2007 9:45 PM (GMT 0)
tongue
sbc,
I didn't have any problems during or after my Remicade infusions (only had 2). I felt anxiety of not knowing beforehand, and the anxiety of waiting to see if it works afterwards. But I just sat in a chair for about 3 hours with the IV in my arm, no pain, no discomfort, no big deal. I felt fine afterwards too. Don't stress about your first infusion, you will be just fine and I sure hope it works for you!
Posted 10/9/2007 11:24 PM (GMT 0)
I just found out today that my doctor wants to try the Remicade as well, and I told him I wanted to read up on it before I agreed to anything. The idea of being hooked up to an IV for an infusion freaks me out. The long term effects he informed me of freak me out as well, though he did say they were rare. Still freaked out!

Question......Do you stay on Remicade long term?? Or just until remission and then if you go back into a flare you start again? Any good sites to look at for Remicade information??
Posted 10/9/2007 11:51 PM (GMT 0)
Hey, I have had 2 Remicade treatments and I haven't had any problems. I drive 45 miles from my home town to get the infusions and I've been fine both times. I usually go out to eat then drive back home. It is just like getting a normal IV for dehydration in the hospital. The only bad thing is that it takes a while, but if I had a home health nurse available in my area I would feel a lot better about it. I have seen dramatic improvement since Ive been on the meds, however I still hurt every day my joints dont hurt at all. Thats what I was most concerned about my GI said I was setting up arthritis. I would get down in the floor to play with my boys and get stuck. Sad but true at 21! Good Luck with everything hope it works for u!!
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