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Crohn's Disease Forum » Parents of Kids with IBD » Move to Weekly Humira


09-14-2017, 12:11 PM   #1
lad473
 
Join Date: Jun 2012
Location: Maryland
Move to Weekly Humira

DS just turned 16. He was diagnosed a little over 6 years ago. Started with Remicade and achieved remission, but then he developed allergic reaction to it. Was able to go without meds for about 6 months before symptoms came back. Started Humira about 7 months ago. Never got the calprotectin levels all the way down (that has been the most accurate test for him). Now having noticeable symptoms (lack of appetite, some pain). Humira blood tests show no antibodies, but very low serum levels, so now he will go to weekly injections.

Has anyone had success with this? It just seems like whenever we try something new it takes soooo long before there is either an improvement or decision to try something different.

While waiting for improvement, I'm hoping Boost high calories will help with him not losing weight.
09-14-2017, 12:56 PM   #2
Maya142
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Both my daughters improved a LOT on weekly Humira. Actually, neither of them really responded till we moved to weekly. My older daughter is still on weekly Humira and MTX, almost 5 years later.

For me, one of the hardest parts of any chronic illness (especially IBD!) is the "hurry up and wait" period. It's urgent that something needs to be done to prevent the disease from doing damage but it takes a while to see the results. And if it doesn't work, you just waste that time while your kiddo is miserable.

But the good news is that he did have some response to Humira and his levels are low (and no antibodies), so it's a "fixable" problem. Hopefully, he will feel better quickly.

It is so tough to wait though .

Boost is a good idea to prevent weight loss. Is he able to tolerate that well? Sometimes kids need semi-elemental shakes but of course, those taste worse.

Hang in there and good luck!
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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
11-29-2017, 10:28 AM   #3
blessedby3miracles
 
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Join Date: Jan 2013
Location: Houston, TX, Texas

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Yes my son Drew is on Humira Weekly but was still showing symptoms like your son. When we added MTX to this mix it was like a miracle!
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Katie
Blessed mom to 3
Jaden-Chrons 15
Drew-Chrons 13
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