Very nervous about starting Remicade...

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Regular Member

Date Joined Jul 2008
Total Posts : 186
   Posted 1/9/2009 11:52 AM (GMT -7)   
I am doing my first infusion of Remicade on Thursday. I am extremely nervous about this as I have read that a lot of folks have had bad and/or allergic reactions to it in one of their first few infusions - hives, tightening of the chest, shock, etc.

I am allergic to basically every Crohn's medication I've tried (Asacol, Pentasa, Budesonide, 6MP, and most recently Humira), so, rightly so I think, I am extra nervous about having a reaction to Remicade.

I plan to take Tylenol and Benadryl prior to the infusions, and I know there will be a nurse present through the whole thing. But, I am really scared. Doc doesn't want to use the IV steriods and Benadryl on my first infusion... they said they only do that if needed for future ones.

What have been your experiences with it? If you reacted, was it really bad? Am I over-reacting?

39 years old female, Dx'd 2000 Crohn's Colitis in entire colon
Allergic to Asacol/Pentasa/6MP/Immuran and many others (too many to remember)
Past meds: Cipro, Pred
Current meds: Humira (...and waiting for it to work)

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 1/9/2009 1:35 PM (GMT -7)   
I too have bad reactions to every crohn's medicine out there, except Remicade. I was on it for YEARS, and it just eventually stopped working, but it really was a savior for me for a long time.

At my first infusion I was running a slight fever. I was premedicated with Tylenol, the fever went down, and we commenced. I started to feel a little short of breath, so they slowed the infusion and gave me some benadryl capsules. I almost immediately went from nervous to sleepy, and they finished the infusion without any other mishaps. I continued treatments, usually feeling tired the day of the infusion and often the day after, but that was really the worst of it. At my request, I switched to IV benadryl for premedication, and would be injected with it immediately before they started my infusions. I found that the IV benadryl kicked in faster and wore off faster, which calmed my nerves AND allowed me drive myself home without being drowsy. I never once went without being premedicated with benadryl, so I don't know if I even really needed it... it was just standard practice there I guess. My kidneys(middle back) would hurt a little bit three or four days in, but I found that chugging lots of Gatorade before and after my infusions helped alleviate that.

All in all, I really loved the stuff. I referred to it fondly as my "mouse juice". I only stopped it because of a health insurance mishap that caused my treatment to be delayed for several months. By the time I went back and got my infusion, it didn't do any good. It didn't do anything bad, it just didn't work like it used to.

I know it's scary, and you have every right to be nervous... Remicade is serious business. But, it also has the potential to greatly improve your quality of life. Relax, think good thoughts, and give it a chance. It might be magic "mouse juice" for you too.

27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

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

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 1/9/2009 3:23 PM (GMT -7)   
I just had my first infusion today just 20 minutes ago :)

i was so nervous that i had to take something to calm me down.

No reaction here did not feel a thing i am so excited. The nurse said that you should try to stay positive think of Remicade as a light that goes through your body and heals you from this bad disease :)

I can understand if you feel nervous because of your history with allergies.

Good luck and try not to be too stressed get something to calm you down before the infusion works wonders.
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort

Regular Member

Date Joined Jul 2008
Total Posts : 71
   Posted 1/9/2009 7:14 PM (GMT -7)   
I've had 5 infusions, on the 5th one I started itching and burning and noticed I was getting welps. They stopped it had me take some benadryl and started it again but slowed it down and I did fine. Today I went for my 6th one and had a reaction even after taking benadryl so won't be able to take it anymore. I'm bummed. Not everyone is the same. Don't worry they will watch you closely just be sure and let them know as soon as you don't feel right
 DX'd with UC 2000.
 DX'd with CD 8-9-08
 allergic to Asacol
 Colazal made it worse
 Prednisone 20mg X2 daily   
 Flagyl 500mg X2 daily
 First Remicade infusion 8-9-08
 Toprol XL --  Hypertension
 Insulin   --   Diabetes 

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 1/9/2009 8:03 PM (GMT -7)   

I have been on it for over 4 yrs.  I was also very nervous my first time.  I suggest having someone go with you.  That way if something does happen, you are not alone and they will know what is going on....I still always have someone go with me. 

The nurses are are so good.  They are used to doing the remicade.  They do it all day all every day, so they know what they are doing and what to do if something happens.  Good luck, and let us know how it goes!


Regular Member

Date Joined Jan 2006
Total Posts : 135
   Posted 1/9/2009 9:36 PM (GMT -7)   

I have been on Remicade now, for over 2 yrs.  I can understand u being nervous.  Don't be.  Look at it is a Miracle Drug.  Was and is for me so far.  I too have reactions during the infushion, almost every time.  I get hot and a shortness of breath.  I just lean over and turn it off, after about 5 minutes we start it again and no problem.  They give me IV benadryl which makes time go by faster.  Usually takes me 4-5 hours.  Don't let is scare you, because it just might scare you so much it might not work.  Anxiety is not good.  If you are nervous tell them you are and maybe they can give you a sedative.   I take it every 8 weeks.  So far it has been a God send.   Just keep positive.  yeah

oh yeah, my last infushion which was 4 days ago, they had to poke me 5 times to get it right.  I was not happy.  I told the nurse that started it, that usually i put a heating pad on my hands.  She said, we do not need to you have good veins.  After 3 tries she calls another nurse. The other nurse tried once, to no avail.  Got the heating pad on. and after about 5 minutes another nurse comes and hits it right away.  Finally.   felt like a pin cushion.  yeah

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 1/10/2009 3:27 AM (GMT -7)   
I might be one of the few here that has never had a reaction. I have been receiving Remicade for 2 1/2 years. I have to take 2 extra strength Tylenol 1 hour prior to my infusion. Right before the infusion, they give me a small amount of Decadron (a steroid.) I've never taken Benadryl and never had a problem. The best of luck to you!!!
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

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