Not sure if I had a reaction to Remicade yesterday or anxiety.... Didn't finish the whole treatment.

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Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 1/20/2009 3:28 AM (GMT -7)   
Good morning, my friends.  I have received Remicade for 2 1/2 yars, and have never had a reaction.  I also get pre-medicated.  I have been very stressed lately, and am prone to anxiety, so I don't know what hapened.  about an hour into my infusion, I felt like I couldn't breathe, got hot all over, and felt chest tightness.  They stopped the infusion immediately.  I took a Xanax in case it was my nerves.  Needless to say, I was so frightened, that I refused the rest of the Remi.  I only had half of the dose in me.  I asked them to take the IV out, and I left.  Now I'm scared to get it again.  My anxiety is running like crazy right now.  Has anyone here ever received half a dose?  Did you go back to finish the rest, or did you just wait until your next appointment?  I don't know what to do.....  Thanks for listening.  Blessings, Julie
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)
 
 
 
 
 


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/20/2009 5:39 AM (GMT -7)   

I had 10 600 ml Remicade infusions at 4 weeks apart. On my last, I was not medicated and I developed severe back pains about half way through. They immediately stopped the infusion and changed the IV to saline, squeezing the bag to get it in faster to dilute the Remicade. The Dr. then saw me and ordered a Benadryl and steroid shot and they hooked me back up and finished the infusion without further complications. Usually Remicade does so much good (plus it is expensive), they will try to get it all in unless they think it is promoting a heart attack. I felt that my lack of pre-meds caused my reaction and felt I could keep having them thereafter. The Dr refused saying reactions tend to get worse so no more Remicad for me and probably for you. Currently I'm trying to get by on Immuran but my G.I. wants me to go on Humira.

Hope this helps.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Need corrective eye surgery and fitted for prism lense to correct that eye from turning out.  Life looks fairly good (literally) today.
Married with 4 grandkids.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/20/2009 7:11 AM (GMT -7)   
Hi Julie,

Sorry this happened to you! I had several infusions and then had a reaction. I was only about 30 minutes into it when I got a tight chest and my face went beet red. I felt quite weird. I called the nurse and about 5 came running over. They stopped in fusion immediately and put benadryl in my IV. That stopped the reaction within a minute. I always got pre-medicated, but my doc said sometimes people react once and then never again. My doc said because I had gotten some in me that we could wait 8 weeks and then try again. Unfortunately, the IV had going for only about 15 minutes when the same reaction happened again. I then switched to Humira and got whole body hives! I'm very glad my doc was cautious with the Humira and only gave me 1 pen!
Diagnosed early 2007 with rectal Crohn's.  Several peri-rectal abscesses and two fistulas with setons.  Allergic to Remicade and Humira.  Currently on 6MP.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/20/2009 8:15 AM (GMT -7)   
I had a couple year break between when I took remicade in a research study, and when I got it prescribed. The first infusion made me feel very anxious, or so I thought. The second infusion made me more anxious, and when I stood up to use the bathroom, I passed out and hit my head. Then my blood pressure spiked, and I broke out in purple splotches all over my body. They stopped the infusion, and then restarted it later at half the speed. The third infusion caused an immediate spike in blood pressure, purple splotches, chest pain, and sharp stabbing pains in my kidneys that made my body jerk every couple seconds. Since the infusion was already going at half speed, they stopped the infusion and sent me home. That was the last one.

I was premedicated for all infusions, but it just didn't help. Now I'm on Humira, which is working for me.

Good luck!

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 1/20/2009 3:36 PM (GMT -7)   
Thank you all for sharing your stories and replying. It means so much. I have a call into my GI to see how we should proceed.....
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)
 
 
 
 
 


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 1/22/2009 4:20 PM (GMT -7)   
I just received a call from my GI. We are going to spread the infusions to every 8 weeks, and he wants me to take one Zyrtec daily for 7 days prior to the infusion. Hopefully this will help.....
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)
 
 
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/22/2009 7:06 PM (GMT -7)   
Good luck Julie hope that works. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


HanooN
Regular Member


Date Joined Dec 2008
Total Posts : 63
   Posted 1/22/2009 7:22 PM (GMT -7)   
You are not alone

same thing exactly happen to me 2 weeks ago but for me it was not even 15 mint then i developed these side effect that you are talking about. the dactor told me no more Remicad for me since I developed these antibodies to this meds. i guess you dont need to take the rest of the dose. you need other meds now. Ask your doctor for Cimzia or Humira if you did not try those.

good luck
Age:28
Diagnosed with CD in Jan, 08.
Meds: Prednisone(40mg), Pentasa (4mg), Hydrocodone, prilosec, Fish oil, Multivitamins
Surgeries : NONE
..........................................
Words are, of course, the most powerful drug used by mankind


cbk
Regular Member


Date Joined Apr 2007
Total Posts : 134
   Posted 1/22/2009 8:05 PM (GMT -7)   
Do they monitor your BP and temp every 15 minutes? They are supposed to in order to prevent incidents like this...
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.

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