07-15-2013, 07:58 PM   #1
youssef's Avatar
Join Date: Aug 2010
Location: Austin, Texas
LDN and Appetite

Hi all,

I been on LDN for about 5.5 months now, started with 3mg and now 4.5mg. Been on 4.5mg for the past 2 months.

Honestly have not really noticed anything, I know it takes awhile so I would really like to stick with it. The problem I am having is I noticed my already low appetite has been getting worse. I eat little and get full very fast. I am already way too thin at 125lb 6ft tall!

Is this normal? Will my appetite eventually come back or get better?
07-16-2013, 04:17 AM   #2
Senior Member
Join Date: Jun 2006
Location: Halifax, NS, Canada

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Mine did. I initially stuck with my IBD diet for years after LDN stopped my disease, as I was terrified that any change might stop it from working. Then I began experimenting a bit (or bite) at a time. Now I eat whatever I feel like. Thing is... hard to digest foods, or gassy foods, do cause me issues with the large amounts of internal scar tissue I have from my disease. LDN will not make scar tissue or damage from the disease go away, OK?

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
07-16-2013, 08:42 AM   #3
JDTM's Avatar
Join Date: Feb 2012
Location: Providence, Rhode Island

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In my experience, my appetite did gradually come back. That said, if you're getting worse and you haven't mentioned it to your doc, you might want to do so. I wouldn't want you to keep losing weight. Your appetite aside, what other symptoms have you been experiencing?
Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (20mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

2000IU vitamin D-3

gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
07-16-2013, 11:36 AM   #4
Jmrogers4's Avatar
My 13 year old son's appetite seems to be virtually non-existent. He now takes in appetite enhancer and does supplemental nutrition (Peptide drinks). He was symptom free and doing great at 8 months after starting LDN but still had not gained any weight. We added the Peptide drinks and he gained 23 lbs in 8 weeks. We have noticed if we stop the appetite enhancer or the drinks, he doesn't eat and the weight starts to drop.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
07-16-2013, 12:10 PM   #5
youssef's Avatar
Join Date: Aug 2010
Location: Austin, Texas
Thanks for all the replies.

I am lucky that my crohns is pretty mild, I rarely have flares (knock on wood) but I know I am having a digestive problem since I can't gain weight.

My bathroom stools are mostly loose, I sometimes have firm stools, but most of the time it's loose.

I don't take any medications, just supplements and limited sugar/wheat intake.

What peptide drink does your son take? Ensure has too much junk in it and I don't want to take that.
07-16-2013, 12:43 PM   #6
JDTM's Avatar
Join Date: Feb 2012
Location: Providence, Rhode Island

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I'd suggest Orgain -- same idea as ensure, but it seems like there's much less junk in it, comparatively speaking at least. You can get them at grocery stores or places like Rite Aid -- not sure what you have for chain pharmacies down in Texas, but start there. I definitely drank Orgain when I was losing weight and didn't have much of an appetite -- it was easy on my guts and it definitely boosted my caloric intake on days where I didn't feel much like eating.

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