Remicade...What you wish someone told you before first infusion

Hi all!  Lots going on here lately with hubby:  pulmonary function test (normal); chest x-ray (normal); stress test (some hypertension--believed to be the pred.); TB reading today (looks to be normal); pill-cam scheduled for Monday, oh boy!

First infusion of Remicade scheduled for next Thursday.  So, what tips do you all have for prepping for the first time?  I think I recall the doc saying they do pre-medicate, but I am not sure.  Should he bring some Tylenol and/or allergy stuff just in case?  Can/should he bring a water bottle (he's a bing water drinker)?

What are some other things we should think about beforehand? Immediately afterwards?  What have been some of your experiences directly afterwards--specifically after your first infusion?

Thanks for anything you can think of....

--newcrohnswife

P.S.:  just want to say that just about EVERYTHING I've learned about Crohn's I've learned from this site, this place is amazing!  I come here and read daily, even though I don't post very much.

 

I would call your doctor and ask him what he means by pre-treat.  I had to take prednisone 10-12 hours before to avoid an allergic reaction.

 

Interested in this too.

I dont bother with the benedryl. they never gave it to me when I had the original infusions at the hospital and i asked them not to at the dr's office because i get tired enough as it is.

I also read ALOT while i'm there. It is like a free vacation day that you're forced to have without feeling guilty.

yeah i used to get a steroid shot and the benadryl right b4, it made things more comfortable for me...keep an eye on the blood pressure, i usually sleep right thru...after eating of course! lol

Most of the people before me have it pretty darn covered, but there's a few more things I'll chime in with.

First of all, it is always good to make sure that you're well hydrated before the infusion. I usually start chugging gatorades a day or two before. It makes finding a good vein much easier, and in my opinion, it makes the whole process easier on the body. And I keep chugging those gatorades for a few days afterwards. From the other crohnies that I've talked to, a little bit of kidney pain (middle of the back pain) is normal a few days after an infusion. I find that the gatorade really cuts down on my kidney pain, which isn't really that bad to begin with. More of an annoyance, really.

Paper Tape is indeed essential. Good call on that one, chromes!

The only pre-meds I partake of are 2 tylenol, and IV benadryl. There are obviously mixed feelings and preferences on the benadryl. I prefer to get a large dose immediately before my infusion. This calms my nerves first and foremost, and allows me to relax and sleep during the infusion. I believe they give me 30mg IV benadryl, but I could be wrong on the dose. Whatever it is, it is the perfect amount to keep me relaxed and asleep for almost exactly 2 hours. I wake up, somewhat abruptly, and am INCREDIBLY hungry. I spend the next half hour to hour eating and getting my wits about me again... and am usually fully recovered by the time their taking my IV out. I've always driven myself home without any trouble.

The only thing I wish I could have done differently would have been to premedicate the first couple of infusions with a drug that did NOT make me feel funny. I remember being nervous trying to figure out if it was the benadryl that was making me feel short of breath, or the remicade. My chest felt kind of tight - but benadryl can do that too... it was just a guessing game that I really could have lived without. I've heard some people say that they premedicate with non-drowsy stuff like Claritin. I would ask for something like that if I had to do it all over again.

If there are going to be pre-treatments that will make him sleepy, I highly recommend bringing some headphones. I don't know what type of infusion center/room you will be in, but I think most of us get our infusions in the oncology ward with the chemo patients, and having a way to drown out the noise is essential when you're sleepy and want to pass out. A neck pillow was an excellent suggestion too, as the "recliners" in most infusion centers are merely the ugly stepchildren of uncomfortable airline seats. Maybe that's another reason that I prefer to be knocked out on Benadryl- I can sleep ANYWHERE on that stuff.

And lastly, never let them put the blood pressure cuff on the same arm as the IV. Most nurses wouldn't do that in a million years anyway, but the ONE time I let a nurse do it and didn't speak up, my arm hurt like the dickens.

Good luck! And never be afraid to flag down a nurse and tell or ask them ANYTHING. Taking care of you and your husband is their JOB, not an INCONVENIENCE!