05-17-2018, 05:12 AM   #1
Join Date: Nov 2016

My 16 year old is on Remicade and methotrexate. One day after his infusion he developed tingling to both legs. Initially Vit B12 levels were greater than 2000 but now normal. Rt leg is weak with decreased sensation. Tingling is worse with exercise. MRI of brain and spine are negative. Neuro plans for lumbar puncture today. Has anyone had something similar?
05-17-2018, 06:43 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I think I have seen a similar reaction on a thread on here regarding humira and peropheral neuropathy. I would ask the doctor about that. I hope he feels better eeal soon.
05-17-2018, 07:50 AM   #3
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My daughter experienced tingling in her extremities years ago. Doctors basically dismissed it and it eventually went away. Now we're dealing with some sort of vein/circulation issue in her legs. Hopefully you get answers quickly.
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies, Intestinal Lymphangiectasia

Treatment: Hizentra, Advair, Zyrtec, Cellcept
05-17-2018, 12:01 PM   #4
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Maya142's Avatar
I think my little penguin's son had tingling on Remicade.

Generally, they worry about demyelination but I think if the MRIs would have showed that.

Did they test to see if he has antibodies to Remicade?
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
05-17-2018, 05:13 PM   #5
my little penguin
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Join Date: Apr 2012

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Tingling in his tongue with remicade
But had other signs of allergic reaction
So the bed was stopped
Had an mri of the brain
No lesions so he was switched to humira

Good luck
DS - -Crohn's -Stelara -mtx
05-21-2018, 11:49 PM   #6
Lynda Lynda
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Join Date: Feb 2018
Location: Arizona

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Sending you my support. 🙂
I had a lumbar puncture back in 2003, but I have issues with my spine not related to Crohn's.
Hope you find relief soon.
Lynda 🌼

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