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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Fear of Restarting Remicade


02-19-2012, 03:32 PM   #1
Jayanth
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Location: Bangalore, India
Fear of Restarting Remicade

Hi,

My doctor has just asked me to go on remicade 5mg/kg for 12 months and this is freaking me out. I have had 2 discontinued remicade infusions before. Once they gave a single shot to see if it helps, a year later they gave me the loading dose of 3 shots and stopped. Now I am really scared to go back on remicade again. What if I have antibodies and have a reaction or something ?
02-20-2012, 09:32 AM   #2
moogie
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It's always a possibility. And the reactions are usualy very direct. I'm sure you bnurse /doctor are aware of this and will be chekcking you when you get your doage. I gather you discused this with your doctor as well?

The fact that everybody knows will diminish the risks. In my opinion it's well worth it because if it works the results are very good.

Good luck
__________________
I'm the Rat Man!!
DX - CD summer of 1987
Current Meds -
Remicaide
Getting Remicade every 8 weeks
Getting 5mg now. full dose. cost 5500$ )
Purinathol 75mg a day


3 resections
2 colostomy
One Ileostomy
Back to normal since May 2015
On Remicade Since April 2011 I am alive again!
02-20-2012, 11:39 AM   #3
SarahAnne
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I have restarted Remicade after having a reaction to it. I get pre-medicated 20 minutes before my infusion, the nurse monitors me very carefully and increases the infusion rate very slowly. I haven't had any additional problems, but if something happened there is always someone there who can respond quickly.

I was initially very scared to go back on Remicade, but the Humira just didn't work for me. I wouldn't have gone back on it if it just didn't work so well for me. The difference with and without it is like night and day.

Good luck with whatever you decide!

(I have not had another reaction since my first, I have stopped and started it 3 times now. I wouldn't recommend it, but it seems that I haven't developed any antibodies yet.)
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
02-20-2012, 11:40 AM   #4
Jayanth
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Join Date: Nov 2011
Location: Bangalore, India
Ya...the doctor knows that there is a possibility of an adverse reaction....I have discussed it with him. But even then.....walking into a possible trap knowingly is scary...
02-20-2012, 07:51 PM   #5
CrohnsNYC
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Join Date: Nov 2010
Location: New York, New York
Hi Jayanth - I have posted before about my horrible reaction after the reintroduction of Remicade after a year off. My first infusion went fine. Although after about a week I started getting really bad joint pain in my hands and arms. Different than the joint pain I had experienced before. The second infusion is when all hell broke loose. I was pre-medicated with benadryl and steriods, and after about 20 minutes I totally stopped breathing and it was truly horrible. That said, the nurses were very close by and helped save me. Also, not everyone has a reaction after reintroduction. I'm not sure how rare it is, but it definitely a possibility. The doctor discussed the risks with me, but we decided to proceed anyway because the need was greater than the risk. I'm glad you voiced your concerns with your doctor. Make sure you are monitored very closely. Also, if anything like joint pain or rash show up, make sure to have it checked out right away. I ignored my warning signals.

Hang in there -- you will be fine! Remicade is an amazing drug. I'm really disappointed I couldn't continue with it.

Beth
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