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

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Regular Member

Date Joined Nov 2007
Total Posts : 99
   Posted 3/13/2008 4:30 PM (GMT 0)   
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....
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.
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!

Regular Member

Date Joined Dec 2003
Total Posts : 494
   Posted 3/13/2008 9:55 AM (GMT -7)   
i always brought a snack and something to drink as mine always ran through lunch. id also being one of those curved neck pillows it makes the recliners way more comfortable. some people fall asleep from the remicade and some fall asleep if you get benedryl and the pillow will be invaluable. at first i was SO afraid that id have to go to the bathrppm but it was really no big deal at all. they just take the bag off the stand and you take it with you. also bring a book or a game boy or something, they usually have a tv buy if theres something not on that you like that can get boring fast.
i always had someone drive me becasue i got this weird feeling after the infusion. i felt tingly and heavy and i was all flushed. and i was super tired. even it i didnt get premeds the cade knocked me out. the doc said my reaction after was alright but if you have anything that happens that is different from what you normally feel, call your doc.
thas really all i can think of. hope it helps
Crohn's Disease Diagnosed 12/24/03 and Bipolar, Migraines, Hypothyroid
Im 26 years old. Im on Humira!! yay!
I am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar, Wellbutrin and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and for migrianes i take topomax as well as inderal for my tremors. Pill time is defnintely snacktime!

Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 3/13/2008 10:14 AM (GMT -7)   
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.
Crohn's and Ostomy in 2004

Regular Member

Date Joined Jun 2006
Total Posts : 28
   Posted 3/13/2008 11:04 AM (GMT -7)   
Couple of things I can think of.
My doctor always prescribes 50mg of Benadryl before my infusion, (along with Tylenol) and that dosage of Benadryl wrecks me for the whole day. I now instruct the nurses to only administer 25mg and it is so much better. I’ve never had tingling or felt heavy after the infusions. I’ve never felt any side effect from Remicade at all. Knock on wood. Just sleepy from the Benadryl.

You may want to have your husband ask for paper tape. I like it much better. The synthetic surgical tape that’s usually used is so sticky, pinchy and uncomfortable. It’s hard to tell if the needle is hurting or the tape is hurting. It’s usually the tape! They will also extract much less arm hair when removing the tape.

First time in will be long. It could take 6 to 8 hours. The infusions will get faster and faster the more you go. You may want to drop him off and come back. I have never had my wife drop me off. I have always driven myself to and from and never feel like I am impaired in anyway.

Bring whatever you want! Water, food, books, magazines, etc. They usually have pillows and blankets there. I used to bring a DVD player and watch movies, with head phones. I don’t have much spare time so to me this was awesome. Now my treatments are quick, and by the time I’m done chit-chatting with the nurses there just isn’t time for a movie. Hopefully your husband will get to know and like his nurses as much as I do.

Good luck. I hope Remicade gives your husband his life back the way it has mine. Don’t be afraid!

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 3/13/2008 11:15 AM (GMT -7)   
Interested in this too.

CD dx @ 13 (1987)
Prednisone 15mg every other day
Imuran 100mg day
Celexa 20mg day
Pain Meds
Vitamins + B12 Injections Once Per Week

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 3/13/2008 11:25 AM (GMT -7)   
It was like a vacation day..nice breakfast, nice nap, lovely!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Regular Member

Date Joined Apr 2007
Total Posts : 345
   Posted 3/13/2008 12:05 PM (GMT -7)   
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.
33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 

Veteran Member

Date Joined Oct 2005
Total Posts : 540
   Posted 3/13/2008 2:42 PM (GMT -7)   
one thing I found for my daughter was when she finished her 2 loading doses and had the rest of her infusions near home they did a longer saline flush than at the other place. when she had her first 3 doses the only did a 10 minute saline flush, and for the rest of the day and totally the next day she was flat in bed. At the new place they did a 1 hr flush and she had absolutely no down time! It really made a BIG difference! I would ask for a longer saline flush if they just want to give him a short one.

One other mother took my advice and her daughter recovered just like mine did!

Good luck!
dx: fibromyalgia, IBS-C,Myofacial Pain Syndrome, Chronic Headaches, hypothyroidism,anemia, insomnia,mild depression.
Clonazapam .25mgs, Oxy IR 2.5-3xs/day 5 mgs at bedtime, Synthroid, Zopiclone, flexeril 
Supplements:    professional vit/mineral, magnesium/malic acid, Ester C,
Daughter Jerica 18, Dx: Crohn's, amitriptyline 50mg, Forvia, AZA 150mgs
 Husband with treatment resistant depression:   Effexor-450mgs
Jerimiah 29:11                      

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 3/13/2008 5:13 PM (GMT -7)   
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
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting has been my Godsend...Thank you

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 3/13/2008 6:18 PM (GMT -7)   
If he's having it in an oncology treatment room make sure he doesn't wear any cologne. Makes the other patients nauseous. I always took a snack, drink, book and carried 50mg of Benedryl with me in case I needed it on the way home. They did have to do a slower drip on me so I wouldn't break out in the hives since I didn't pretreat. Always drove myself as I lived 10 minutes from home and the Benedryl wouldn't have kicked in before I got home. The first trip will be the longest since they'll need to weigh him and such. Love those heated blankets. My treatments required temp & blood pressure checks every 1/2 hour. Never had a problem with the treatments. Just built up antibodies to the Remecaid after awhile and had to switch to Humira. Good Luck to you. Oh, also, If you're husband works you might consider scheduling the treatments on Fridays so he has the weekend to recoup.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 3/13/2008 6:47 PM (GMT -7)   
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!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

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