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09-16-2014, 10:42 AM   #1
tnthudson
 
Join Date: Aug 2014
Location: Lynchburg, Virginia
UC and fatigue

OK I mentioned in another thread that I would separate this out...
My son (17 yo) began his UC experience with a bang - big flare that lasted for months, may still technically be in it.
After months of different drugs (going up the ladder) and prednisone pretty much constantly needed, he began Remicade and Otrexup (injection), and seems to be doing better as far as pain goes. He's been off the prednisone for a few weeks and no hard relapses, so that's great.
However, he still complains alot of fatigue. I don't think it's as bad as before he began Remicade - he would sleep pretty much until noon or 1pm in the summer - but now that he has a school schedule again, he's going to bed at 7 or 8pm alot of nights, and complains of being very tired pretty much all day.
Any folks had any luck fighting fatigue?
We have a follow-up appt. with the GI next week and will mention this, but just didn't know how common this is with kids, or what can be done, if anything.
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Son dx with UC in October 2013 @ 16 y.o.
Have gone through a dizzying array of various Aminosalicylates, Immunomodulators and Antibiotics.
Could not stay off Prednisone until beginning Remicade & Otrexup (Methotrexate) Aug. 2014. We'll see how it goes...
09-16-2014, 10:47 AM   #2
Maya142
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It's very common - my kid is completely exhausted when flaring! When her disease is under control, she's much more normal.

On your other thread, you said he has only had a couple of Remicade infusions - it may take more time than that. My daughter took 3-4 infusions before she really felt good. The fact that you have seen an improvement is very promising!

Also ask the GI to check for vitamin deficiencies, they can cause fatigue. We also found that when she's not getting enough calories she was exhausted all the time. Now that she is getting Peptamen via NG tube at night, she feels a lot better.
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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
09-16-2014, 01:43 PM   #3
nogutsnoglory
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Could be the underlying disease, medication side effects, neuronal deficits or likely a combo.

Certainly bring it up with the dr, they can run bloods on b 12, iron, folate, vit d to check what's going on. They can assist the dose as well for any meds.
09-16-2014, 03:26 PM   #4
Sascot
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My son is doing really well just now, but still suffers from fatigue. He does manage school and PE, but that's about all. Some days are better than others
09-16-2014, 03:29 PM   #5
Farmwife
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My dd is the same way. Was very run down all the time
but since the first Remicade infusion she's had more energy......way more enery
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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
09-18-2014, 12:45 PM   #6
tnthudson
 
Join Date: Aug 2014
Location: Lynchburg, Virginia
Cool, thanks, ya'll. Hopefully after a few more rounds of Remicade he'll feel even better. We will mention it to the Dr. next week of course.
09-18-2014, 07:29 PM   #7
my little penguin
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Good luck
It took a while for DS
Hope things turn around spon
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