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First Remicade Infusion Tomorrow

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Ulcerative Colitis
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Posted 4/8/2008 1:30 AM (GMT 0)
Hi Everyone,

I have my first remicade infusion tomorrow morning. It is in ASU at the hospital which is where I have my colonoscopies. I have a few questions for everyone.

-How do I expect to feel during the infusion and after?
-What should I expect to be done?
-Will I be able to move my arm during the infusion?
-What can I do to keep busy for the 2 hours?
-Do I have to change into a hospital gown or can I wear my PJs (which I would rather do)?

Any answers would be great! I hope this works and I start feeling better soon.

Thanks,
Bratcat
Posted 4/8/2008 1:43 AM (GMT 0)
Hi, Bratcat. I get my infusion at an infusion center. Nice comfy recliner chairs, calm atmosphere, it even has wifi. I read, sometimes work a little, sometimes take a little nap. I see people listening to music, watching DVD's on those little DVD players, using their computers, watching television, playing with gameboys. A surprising number of us take naps.

Here's the routine for me: When I arrive, the nurse weighs me then asks about any illnesses I've had. She takes my temperature and blood pressure, then starts the IV. That's the only little bit of pain. They tape it up good and I can use my arm and hand. I don't feel anything during the infusion, but I'll usually feel a little tired after. I wear my street clothes throughout; not sure what they'll do in the hospital, but I don't see why you'd have to put on a gown. Most of us seem to find it a very soothing experience.

I also hope it works for you so you can get back to being yourself again! Let us know how you do.
Posted 4/8/2008 3:14 AM (GMT 0)
post about how it goes for you afterward I have my first one in a couple weeks
Posted 4/8/2008 3:49 AM (GMT 0)
Best wishes for the Remi to subdue your flare ASAP. We are all rooting for you here! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 4/8/2008 3:52 AM (GMT 0)
-Probably really tired with a possibility of cold-like symptoms.
-They'll have you take Tylenol (to keep down your temperature) and Benedryl/some other antihistamine. They'll put you on saline IV for a bit, mix up the Remicade, then get it started. I believe it has to be completed in 5 hours on your first infusion.
-You can move some; it's just a normal IV.
-I usually read a magazine or listen to my iPod. Taking a nap is ALWAYS a nice option!
-I'm always in street clothes.

There's a possibility of respiratory reactions (a pseudo-allergy, I believe) on your first infusion, so they'll keep an eye on you. They give you the oral meds each time in order to prevent such reactions.

Best of luck!
Posted 4/8/2008 5:10 AM (GMT 0)
hello!  Good luck on your first infusion...I hope it goes as well for you as it has for me and others here!  I got my first infusion in the hospital and I had to wear the gown, but that's because I was an inpatient at the time.  Now, I still go to the hospital but to there outpatient infusion center and I just wear my street clothes.   I would think you should be able to keep your street clothes on as well,  but not sure.  I go in and they ask me about any recent illnesses (you can't get the infusion if your sick at all).  Then they take vital signs (expect to get this done quite frequently throughout the entire infusion).   Then get the IV started,  at that time they give you the pre-meds.   I get tylenol and Benadryl.  Then,  they start the infusion...they go real slow at first,  and then it speeds up as time goes by and if your doing ok.   The benadryl makes me very sleepy, so while I recline in the chair,  watching tv,  I always doze off.  Its so relaxing.  They offer drinks and snacks if I need it (i'm diabetic).   But I have learned to take my own as well.    A few times,  I have taken a book to read, but don't usually get too far into it, as I always get sleepy.   After my first few infusions, I was VERY sleepy all day long,  but since then I'm not so sleepy when I leave,  only while I get it.   A few times I have taken my little hand held solitaire game as well.  But again,  I get so sleepy so don't play it long either.   You can take an mp3 player too, If you want to listen to tunes.  Hope this helps!!   Well,  good luck with your first one!!  :o)    
Posted 4/8/2008 10:44 PM (GMT 0)
Bratcat, by the time I saw your post you probably already had your infusion. I bet it went better than you thought it would. I was nervous about my first one too but it was such a snap I now look forward to them -- of course I am 46 years old and love to have time by myself when no one can pester me. If I was 16 years old I am not sure I'd look forward to sitting in a chair for a couple of hours. So, by now you know you can wear your clothes, move your arm and probably didn't feel anything unusual. Did you have to take Benedryl? I am lucky that I don't so I don't feel tired the rest of the day. I bring my Zune and make sure it's loaded with plenty of audio and video podcasts, I bring a book and I usually bring that morning's paper and work on the crossword. I also like to stop at Einstein bagels on the way to the hospital to pick up some breakfast to eat while I am there cuz the hospital food is horrid.

So let us know how you feel! I felt a difference after a few days.

Meesh
Posted 4/10/2008 3:27 AM (GMT 0)
Hope you can post to us soon. All best wishes! / Old Hat
Posted 4/10/2008 5:30 PM (GMT 0)

Hi everyone!

So I had my first remicade infusion on Tuesday. I had a horrible morning and finally got to the hospital around 1:30ish. The actual infusion wasn't bad but waiting around freaked me out. I don't like hospitals.

I sat in a chair in the corner of the room which made it a little easier because it kind of blocked me off from the rest of the room and what was going on. We had to wait a while for the remicade mixture to be ready. That is the only time I really couldn't stand because I had to just keep waiting. Once everything was ready they gave me tylenol and benedryl. I personally hate benedryl because I get so out of it. It did make me tired but I didn't sleep. The infusion finally started around 2:20ish and I finally was done around 5:20ish. I ended up just watching tv (luckly one of the 8 channels they have was one that I like watching!) The nurses are really great over there and kept coming over to make sure everything was okay and stuff.

It really wasn't too bad. There were a few times that I moved my arm a certain way that the IV got blocked and the thing would beep and have to reset. My mom and I were having fun because we made the thing they put on my finger to measure my heartbeat nuts. We made it go off quite a few times. One of the nurses said that if you hold your breath it will go off and make everyone nuts (I thought about doing that just for amusement).

I came home had dinner and fell asleep pretty early. I slept until 9ish which normally I can never do. So yesterday and today are definitely better days that Tuesday. I won't cough it up to remicade yet but I'm sure that may have helped. I'm hoping this will do the trick. I go back on April 22. 

Thank you to everyone that responded. It really helped to be able to ask those question and know what I was going to expect.

Posted 4/10/2008 9:22 PM (GMT 0)
I am glad you made it there after such a rough morning. I hope that the Remicade works well for you.
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