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04-29-2014, 01:57 PM   #1
Kyle's mom
 
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Join Date: Apr 2014
Location: Upstate NY
Unsure

K has had 2 bowel obstructions in the past 8 months. Steroids have cleared inflammation, colonoscopy an MRE were normal. K has been on Remicade and methotrexate for some time now. In my opinion the Remicade is not working but GI is only increasing dose. What are everyone's thoughts?
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Kyle's mom
Kyle age 16
Diagnosed 2010
Resection July 2011
Currently on Remicade and Methotrexate
04-29-2014, 02:05 PM   #2
Brian'sMom
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Join Date: Dec 2010
Location: Kansas

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In our experience the GI always increases dose or time inbetween etc before changing meds. They told us they are told over and over not to give up too soon on a med because then you cross one off the list
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Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
04-29-2014, 04:40 PM   #3
my little penguin
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Same here DS needed a higher dose and shorter frequency for remicade to keep working for him.
Humira same thing higher dose was needed .
Good luck
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DS - -Crohn's -Stelara -mtx-IVIG
04-29-2014, 04:49 PM   #4
Farmwife
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Location: Michigan

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Yes, same thing. Give it more time, increase dose and hopefully it will help.
The hard part for me is the waiting.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-29-2014, 04:58 PM   #5
Maya142
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Same as above - M is on a very high dose of Remicade every 4 weeks.
Have they done the antibodies test for Remicade?
Waiting is the absolute worst!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-29-2014, 05:07 PM   #6
Kyle's mom
 
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Join Date: Apr 2014
Location: Upstate NY
Same as above - M is on a very high dose of Remicade every 4 weeks.
Have they done the antibodies test for Remicade?
Waiting is the absolute worst!
He has been tested twice for antibodies and he has none so far.
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