Share Facebook
Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » ED? Nothing helps, stopping humira-remicade next


06-17-2013, 06:32 PM   #1
Arttillygirl
 
Arttillygirl's Avatar
 
Join Date: Aug 2012
Location: Dallas, Texas
ED? Nothing helps, stopping humira-remicade next

My 18 year old has been on humira a month and has vertigo, fatigue and headaches (one was a 9 out of 10) worse than the UC. It's been a year since the diagnosis and nothing has helped.
She starts college in the fall and isn't looking forward to living like this.
We tried all the diets except Elemental. Anyone have success with it?
__________________
Daughter Diagnosed 8/2012 UC
Asacol headaches
Lialda no effect
Short term steroids twice
(kinesiology - dumb and expensive)


Now:
Pentasa
VSL probiotic
Cipero (just stopped in favor of another antibiotic) Antispasmodics as needed
Started suppositories again for heavy bleeding
Selective Carbohydrate Diet, Paleo vegetarian diet (plus salmon) 2 months
No dairy or meat for years now
06-18-2013, 09:21 PM   #2
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Is the Humira causing those or she has those in addition to UC? A month on Humira is not enough time to tell if its working. I think the 3 month mark is a good time to make that decision.

As for the elemental diet it is extremely successful but the problem usually returns after stopping it and one can't be on the elemental diet forever.
06-18-2013, 09:27 PM   #3
Arttillygirl
 
Arttillygirl's Avatar
 
Join Date: Aug 2012
Location: Dallas, Texas
Yes it's coming from the Humira. She can't start college like this, dizzy and fatigued with a daily headache.
Thanks
06-18-2013, 09:55 PM   #4
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
Has she tried other biologics like Remicade or Cimzia? Just because she isn't doing well on Humira doesn't mean she won't on the others. What is the doctor saying or recommending?
06-18-2013, 10:03 PM   #5
Arttillygirl
 
Arttillygirl's Avatar
 
Join Date: Aug 2012
Location: Dallas, Texas
She's about to start remicade
06-18-2013, 10:24 PM   #6
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
I hope she will find that to be effective and that there is a clinic that can administer it near her college.
06-25-2013, 02:52 AM   #7
Spooky1
Forum Monitor
 
Join Date: Sep 2011
Location: South Northants, United Kingdom

My Support Groups:
Must say that I didn't get on with humira and actually I've been on EN for about 12 years now. I do eat bland food, but still have issues with crohns. I have had a lot of intestine removed though, still got strictures with ulcerations and bleeding. Think EN works best if provided early on and perhaps before surgery.

good luck though and I hope your health improves. Most of us know how difficult life can be with crohns, I hope she manages to study.
Reply

Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » ED? Nothing helps, stopping humira-remicade next
Thread Tools


All times are GMT -5. The time now is 02:49 AM.
Copyright 2006-2017 Crohnsforum.com