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11-29-2016, 10:59 PM   #1
Cdmom
 
Join Date: Nov 2016
Remicade fatigue

We are post dose #2 of Remicade just off of Humira. It seems his fatigue has returned. Just curious to hear how other kids have managed the fatigue and if it tends to fade with further treatment.
11-29-2016, 11:14 PM   #2
my little penguin
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Join Date: Apr 2012

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You need to really get past the loading doses (all three of them)
Mostly it's from Benadryl and Tylenol given at the infusion
Ds got his infusions first thing in the am
So he could sleep the rest of the day and be fine the next day
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11-29-2016, 11:30 PM   #3
Cdmom
 
Join Date: Nov 2016
They haven't been pre-medicating with Benadryl or Tylenol and the fatigue has been ongoing for several days post infusion. Hopefully it will improve after dose #3
11-29-2016, 11:32 PM   #4
Maya142
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It takes time . For us it took 2 infusions before we noticed any sort of change at all. But it took 4 infusions before my daughter actually felt GOOD. Some kids take even longer - I have heard some say 6 months.

Has he had labs recently to check if he's anemic or if B12 or vit D is low? And iron studies?

Hang in there!
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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
11-29-2016, 11:38 PM   #5
Cdmom
 
Join Date: Nov 2016
Thank you all for the input. Hgb was good at 16. Has a Vit D deficiency and is on a supplement. Hasn't had a recent B12 or iron test.
11-29-2016, 11:44 PM   #6
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter was one who took almost 6 months before starting to respond well to Remicade, but that's unusually long. She also got a few iron infusions that helped her fatigue. Hope your son starts feeling better soon!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
11-30-2016, 02:15 PM   #7
Iamlunatic
 
Join Date: Nov 2016
Location: Dallas, Texas

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I'm 18 and I get Remicade usually first thing in the morning so I can sleep the whole day and be somewhat alert the next day. The fatigue does remain for a few days for me, but I'm usually fine and feeling good after the first week after I get my infusion. I'd say probably wait it out and make sure he gets lots of rest. Since he's new to the Remicade though, it can take awhile to kick in, mine took 2 or 3 months before I was finally feeling good. Im going through a flare and my body has started to reject the remicade, so I'm tired all the time and know how he feels. I hope he starts feeling well again soon!

12-06-2016, 07:48 AM   #8
CrohnsKidMom
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Join Date: Mar 2013
Location: (Canada), Nova Scotia

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My son is fatigued from his infusion, but he feels fine the following day. Although, compared to his brother and his peers he definitely has less energy. For him, I think that's just part of having Crohns and less about the med.
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Son diagnosed with Crohn's March 2013, at age 8
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