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tamatha
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/3/2008 12:28 AM (GMT -6)   
My daughter is suppose to start remicaide next week. I have read about all of the side effects and am very worried about this. Any suggestions?

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 12/3/2008 8:18 AM (GMT -6)   
I took Remicade and had major effects of it. When I started reacting to it, I went to my Doctor and pressed for another plan if Remicade didn't work. I tried my 3rd dose twice before switching to Humira. Give Remicade a try, first time should be no problem, the people administering the medicine monitor the first 3 doses closely. If anything happens, make sure there is a "plan b."
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 12/3/2008 8:21 AM (GMT -6)   
I've been on Remi for over three years with no side effects and am in total remission. I was so very sick when I started my treatments and I'm now back to living life again.

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


KatieBwithUC
Regular Member


Date Joined Sep 2008
Total Posts : 121
   Posted 12/3/2008 9:12 AM (GMT -6)   
I had 2 doses of Remicade with no problems and then my 3rd and 4th were coupled with a horrible reaction. I had problems breathing and had horrible nausea and they had to stop the infusions. Now I am starting Imuran because I can no longer take Remicade. It's a shame because I think the Remicade was really working.


-Katie, age 25

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/3/2008 2:18 PM (GMT -6)   
I've been on it for nearly three years with total remission and a normal c-scope, no side effects. Hopefully it will be successful for your daughter.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 12/3/2008 7:36 PM (GMT -6)   
I had it 4 years ago. Around 5 infusions, and saw some side effects, but they were nothing compared to the flare I had at the time and it worked.

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/4/2008 7:55 AM (GMT -6)   
I think the side-effects are rare -- mostly people posting to the board are reporting either success (mostly) or failure with no adverse effects. When my GI heard from me that I was active on the UC sites, he warned me that people NOT doing well tend to post more than people who do well, so to try not to get too alarmed at a lot of negative posts. Well, if this is true, Remicade must be quite safe as hardly anyone seems to be posting negative effects. Of course, I think the longest anyone can have been on it, barring clinical trials, is just a few years.

I've been receiving infusions since July 2007 and it was only was I was able to get off the Prednisone. It took me a very long time to achieve remission, however, I was seing enough of an improvement that we kept at it. This past October my colonoscopy showed I was just about healed, only a final few centimeters were moderately ulcerated and Rowesa and Canasa seem to have set that right. Except for a few rough mornings now and then I seem to have achieved a good remission.

Your daughter will be closely monitored for ALL infusions, not just the first three. After more than a year my BP and temp are taken before infusion and every 30 minutes and I am checked on frequently. Nurses never leave the room.

Make sure you bring along plenty of quiet activities for her to do, she'll be confined to a comfy easy chair for several hours.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


FitWithUC
Regular Member


Date Joined Nov 2008
Total Posts : 64
   Posted 12/4/2008 8:16 AM (GMT -6)   
Since 2005 here, no side effects :) (that I know off)
Male, 21. Puerto Rico
DX: Ulcerative Colitis as of 06/05
Remissions: Remission: 01/06 till 10/08
Current Treament: Asacol 2400 MG 2X daily, Rowassa nightly, 1MG Folic Acid, 40 MG Prednisone, Remicade, New ChapterĀ® Multivitamin, New ChapterĀ® All-Flora Probiotics, Dolomite Calcium Supplement
Status: Flare!!!!!!!!

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