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Starting Remicade

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Ulcerative Colitis
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/5/2013 8:35 AM (GMT -7)
I start Remicade tomorrow. I wasn't expecting it to happen this quickly, since I haven't met my doctor yet, but they had a cancellation so I have to be there at 8 in the morning. I'm a little nervous!!
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Pluot
Veteran Member
Joined : May 2012
Posts : 2500
Posted 8/5/2013 9:10 AM (GMT -7)
Don't worry! Be excited, this is likely to be the beginning of some relief :) Getting the infusion is no worse than getting an IV. Bring a book or something to keep you occupied, although you might get drowsy enough to just take a nap (you will probably be given a dose of OTC benadryl as a "pre-med", this is given to reduce the likelihood of an allergic reaction).

Most people don't feel any different at all while they're getting it, some people will actually notice an improvement during or after the infusion. Don't worry either way. Relax and good luck!
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/5/2013 9:16 AM (GMT -7)
Thanks so much for the encouragement Pluot. I am excited and hopeful, and I thought I had made peace with the risks, but now that it is actually upon me, I got a little nervous. I really appreciate your support!
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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 8/5/2013 9:39 AM (GMT -7)
I've always found my infusion time a great time to just relax and meditate. For a short time I was having to go to a hospital infusion center which was busy and noisy, and I hated that. The smaller free-standing infusion centers I've found to be very tranquil, I can ask them to dim the lights, lay back in a recliner and listen to music or just rest. I take my Kindle and my I-Pod with me, but sometimes don't actually use either.

I've been on Remi since March 2006; hope it works as well for you as it has for me.
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Scaresic
Regular Member
Joined : Jun 2013
Posts : 27
Posted 8/5/2013 9:41 AM (GMT -7)
Nervousness is good. Embrace it and do not be afraid.
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/5/2013 9:48 AM (GMT -7)
Thanks y'all. @Judy, I'm not sure what to expect as far as the infusion center goes, since I haven't even met my new doctor yet, but I am hopeful that it will be a tranquil experience like you have described. Thanks for the support.
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Dr-A
Veteran Member
Joined : Jul 2006
Posts : 2105
Posted 8/5/2013 11:50 AM (GMT -7)
Ask for a pillow and warm blanket right at the get go. I get cold during the infusion. I just lay back, close my eyes, and nap. Makes the infusion pass quicker.
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/5/2013 12:14 PM (GMT -7)
Thanks Dr-A, I will do that. :)
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Beth75
Veteran Member
Joined : Jul 2007
Posts : 2158
Posted 8/5/2013 12:58 PM (GMT -7)
Good luck with remicade : )

I get warm blankets, benedryl & tylenol, a recliner, DVD player if I want one, I usually doze on and off and bring my nook and ipad (same as Judy).  The nurses are super sweet and take great care of me.  The first few infusions I was tired after and went home and fell asleep and woke up the next morning.  Now I'm a little tired but not too bad.  I did have small headaches after the first few infusions as well. 

I wish you the best!

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Peety
Veteran Member
Joined : Mar 2008
Posts : 2855
Posted 8/5/2013 1:55 PM (GMT -7)
That was my line: be excited!
I was so excited during mynfirst infusion that I cried a little.
Think positive!
I too take advantage of the pillow and blanket. No TV, just relaxation, with a book or magazine and a crossword puzzle. Once I decided to make a business call, and my blood pressure went up! So I try not to do that.
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/5/2013 3:58 PM (GMT -7)
Thanks you guys for the support and letting me get a glimpse of what to expect. I'm going to take my favorite cozy blanket with me and a good book. Thinking positive thoughts!
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 8/5/2013 4:19 PM (GMT -7)
I hope it goes well, michelle!!

I remember I had such a good night's sleep after my first infusion. It was nice to not be going to the bathroom so much. I had been very nervous that morning driving to the infusion center and I was crying so much!! I even cried at the beginning of the infusion! the nurse was so nice though and she understood how scared I was. I don't think I even spoke for the first hour. After the first infusion though, it was such a breeze and the nurse and me were BFF's.
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ScienceGirl
Veteran Member
Joined : Oct 2012
Posts : 511
Posted 8/5/2013 4:27 PM (GMT -7)
Good luck! I wasn't too nervous when I went to get my first infusion, although I was generally anxious about the treatment not working, since I was so sick!

I like getting my infusions--it's relaxing for the most part.
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 8/6/2013 1:21 PM (GMT -7)
hey michelle. just wanted to see how your infusion went. hopefully it was very uneventful!
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jac91584
Regular Member
Joined : Oct 2011
Posts : 379
Posted 8/6/2013 1:45 PM (GMT -7)
i find myself incredibly bored during the infusions. although flirting with the cute nurse every 30 minutes when she checks my bp/temp keeps things interesting... i keep trying to get them to up my flow rate from 125ml/hr but they won't budge no matter how much i ask...

anyways, hope your first infusion went well and you see a difference pretty quickly. i remember my first infusion went amazing, and the results were fantastic!
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Michelle816
Regular Member
Joined : Aug 2012
Posts : 120
Posted 8/6/2013 4:33 PM (GMT -7)
Thanks you guys, SO MUCH for all the support. My infusion went well. I have to travel about 60 miles to get it, so the hubs took off today and went with me, because we didn't know how I would react. Usually when I have to travel to the doc that far, I don't eat at all and barely drink water because I am afraid of not being able to get to a restroom in time. This morning was no exception. The staff at the infusion center was excellent. I couldn't have asked for better care. about halfway through, I experienced some mild itchiness, so they gave me a shot of Benedryl in my IV which helped. My stomach felt better after the infusion, to the point that I got brave and stopped for lunch. Made it home without any incident! (that was a nice victory). At about 5 hours out, the itchiness has returned with a mild rash. Took some Benedryl and it seems to be subsiding for now. Anybody else have this side effect? The nurse told me it was common. If you guys get it, how long does it typically last? I appreciate you all so much!
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