Why am I nervous?

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Regular Member

Date Joined May 2009
Total Posts : 159
   Posted 8/24/2009 4:31 PM (GMT -7)   
Hello all. I saw my GI on Friday. Humira induced headaches,so, I am no longer able to tolerate it. She wanted to start me on remi infusions ASAP. Ok. Well, they called today,and want me to come tomorrow. Kinda sudden to me. This is all old news to most of you. (many posts about it, is what I mean).  Apparently,I looked pretty bad. I did get a nice couple bags of fluid out of the deal. I sound a little nutty,but for some reason,I am anxious. One more time, please tell me what to expect. Thanks. Yes, i sound like a baby!! I do have xanax, but rarely take them. Perhaps I should......?

Mary Lynn

Veteran Member

Date Joined May 2009
Total Posts : 506
   Posted 8/24/2009 5:42 PM (GMT -7)   
My Remicade infusions are the same as any IV has ever been. The nurse starts the IV, gives me a couple Tyleon and a Benadryl and when the bag is ready, throw that onto the tree. Nothing too dramatic.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 8/24/2009 6:32 PM (GMT -7)   
I actually used to look forward to my Remicade infusions. It was 4 or 5 hours where I was not in charge, I guess.

I'd check in. Eventually get taken back to the infusion wings... usually had my own little curtained area, but sometimes you get put in rooms with other chairs, or people getting chemo. I never cared much because I usually just put my headphones on and went to dream land.

Anyway, after you are in the infusion area, a nurse usually will come to take your temp and your blood pressure, and start your IV. Once those are established, the nurse will call down to the pharmacy to have your Remi mixed up. At least, that's how it worked at my hospital. Depending on what time of day or how busy, it can take anywhere from 15 minutes to 4 hours to get the Remicade actually delivered and in the possession of the nurse. It has to be mixed, and has a limited shelf life.

Once the Remi actually physically arrived, the nurse would give me 2 tylenol capsules, then a dose of benadryl through the IV. Once the beny hit me, I relaxed and faded out. I don't remember exactly how long it was... it seems like everywhere I've ever gotten Remicade has done it differently anyway. I want to say 2-3 hours from the time the infusion actually starts dripping to the time the bag is empty.

Once all the juice is in you, some places make you stay for 30 minutes for "monitoring". Some places won't let you drive yourself home if you premedicated with benadryl. Some places make you where a cuff that takes your stupid blood pressure every fifteen minutes and ruins perfectly good dreams in the process. Lol.

Everywhere is a little different, obviously, but there ya go. Just like anything else in this crohnie-world - a good nurse can make all the difference, but really it's not a bad process. At one hospital, I even woke up to a free turkey sandwhich, chips and grapes every infusion. I got so used to it that I had to start packing my own when I switched infusion centers. I would wake up from my benadryl nap and absolutely HAVE TO HAVE a turkey sandwich.

Everyone's a little different too, as far as how they feel after obviously. I always slept the rest of the day after my infusion, and most of the next day. I found that if I tried to do too much I just felt as though I had been side-swiped my a semi... just exhausted and done. I always schedule my infusions when I knew I could be lazy for a day or two afterwords, but it wasn't a necessity.

Stay hydrated. Sometimes I think my back would hurt as it filtered all that Remi through, but I noticed it stopped if I kept up with the gatorade around infusion time. Also, sometimes I would get really bad gas for a few days right after the infusion. Nothing too bad, just weird.

You have every right to be anxious. This is big stuff. I think that's why I got the beny IV... I would be fine until it was about to actually start, and then I would tweak out a little. The IV beny took the edge off, and was considered necessary premedication, so it was a win-win.

Good luck with everything. Breathe deep. ((smile))
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone

Regular Member

Date Joined Jul 2009
Total Posts : 342
   Posted 8/24/2009 9:06 PM (GMT -7)   
glad to hear how this goes..i am waiting on approval from my doctor

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa cipro flagyl vicodin

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 8/24/2009 9:29 PM (GMT -7)   
sit, lay down, relax, get IV, watch tv.

Regular Member

Date Joined May 2009
Total Posts : 159
   Posted 8/25/2009 5:07 AM (GMT -7)   
Thanks, and off I go!

Mary Lynn

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