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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Getting worse because of LDN


01-12-2013, 06:27 AM   #1
crohninator
 
Join Date: Jan 2013
Getting worse because of LDN

Hi,
Two weeks ago I started LDN, because my crohn`s doesn`t respond to any therapy. I`ve tried Prednisone, 6MP, worms, antibiotics, SCD-diet made thing even worse... I can tolerate less than 10 kinds of food because of extreme leacky gut and very strong inflammation in my small bowel.
The thing is, that I`ve definitely got worse without changing anything else. I am not extremely worse so that I can definitely tolarete that for some periode of time. But I don`t know if I should.? Is that sort of flare normal?
Thank you
01-12-2013, 07:30 AM   #2
Kev
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Getting (or feeling) worse at first "seems" to be fairly normal when starting LDN. I did. As for why, any thoughts I would have would be pure speculation. Waiting for things to turn around can be nerve wracking, but if you persevere until LDN does its thing, I believe you'll find it was worth it.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-12-2013, 02:07 PM   #3
Jmrogers4
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My son flared about 2 weeks in on LDN we kept going as well and have been great the last six months. It can take quite awhile for it to kick in, I know my son's GI said to give it 12 weeks. He did start feeling better about the 4th week and just kept feeling better from there so much so that his GI was very impressed with everything when we saw him 12 weeks after starting.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-13-2013, 05:13 AM   #4
crohninator
 
Join Date: Jan 2013
Thank you for posting your experiences,
The thing is that I will have to use LDN-cream, because I can`t tolerate LDN because of its bitter taste. I hope that the cream will also work for me. Are there any people on this forum who had success with LDN-cream? This info would really help me.
Thank you
01-13-2013, 06:18 AM   #5
crohninator
 
Join Date: Jan 2013
OK, after doing some research I am very optimistic about the transdermal option. And I`ve already found a German pharmacy that makes transdermal LDN.
"Show must go on."
01-13-2013, 08:00 AM   #6
Kev
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Bitter taste???? I've taken close to 2000 LDN pills... never tasted one. Mine are gelatin or cellulose capsules, and have no taste that I can pick up on.
01-13-2013, 09:01 AM   #7
crohninator
 
Join Date: Jan 2013
If you dissolve Naltrexone in destilled water, then it tastes very bitter
01-13-2013, 03:33 PM   #8
Jmrogers4
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Pills here so no bitter taste, sorry no experience with the cream
01-13-2013, 05:09 PM   #9
crohninator
 
Join Date: Jan 2013
The taste is not a problem for me. But if I eat or drink smth. bitter, then I sit in the bathroom all day long.
01-13-2013, 05:45 PM   #10
KatyBuckeye
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A suggestion for you...I take liquid LDN. The taste doesn't bother me that much, but I sometimes put it in with a bit of juice and then I can't taste it at all. I've heard that the cream is also effective, but I would prefer the liquid. It's easier to control the dosage, IMO.

As far as getting worse, it is very common when taking LDN to experience an increase in symptoms before they improve. A few weeks is not nearly enough time to evaluate if it is going to help you. Some people don't reach maximum improvement until 6 months or even a bit longer. If you can stick it out, I'm very hopeful that it may help you.
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01-18-2013, 08:10 PM   #11
rollinstone
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Hey chroninator, wondering if you're feelIng any better
01-25-2013, 03:44 AM   #12
crohninator
 
Join Date: Jan 2013
So, I had to stop taking liquid LDN because of intolerable bowel symptoms. Yesterday I recieved the cream from coastal compounding, which I was very sceptical about. But after taking (putting) 3mg on my skin, I did have vivid dreams all night long. I think it does really work.
01-27-2013, 11:53 PM   #13
Laura44
 
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crohninator I hope the cream works for you! I have been taking the compounded pills and had to make some adjustments early on because of the filler I was using...then again later the higher dose was too much. Once I found the perfect combo it starting working almost immediately. Good luck - keep us posted how you do. I love hearing LDN success stories!
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02-23-2013, 08:24 AM   #14
crohninator
 
Join Date: Jan 2013
So, I`ve tested transdermal LDN and I can definitely tell you that it works. I could use it only two weeks, because I`ve got terribly worse because of it. I had to visit the toillet 20 times a day with terrible diarrhea. Then high temperatre started and I decided to stop. After 2 weeks without it the situation improved and I am again there, where I had been before LDN. I still believe that LDN works for many people but not for me.
You should try it and see if it works for you, its the only way.
Good luck everybody
02-27-2013, 02:45 PM   #15
kromom1
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So if the dosage of LDN is not weight-based, how do you decide how much to take? My provider started me on 4.5 mg right off the bat.
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Lisa

Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
02-27-2013, 02:51 PM   #16
Jmrogers4
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That is what my son takes and the studies done by Jill Smith indicate that dosage for adults. I believe Ctrl Z, JDTM and Kev all started and take 4.5mg. However in a pediatric study done by her she states 0.1 mg/kg for pediatric patients. So if my math is right that would be 100 pounds would be at the 4.5mg. According to the study my son should be at 3.5 based on 77lbs but since it seems to work I'm loathe to change anything.
02-27-2013, 05:37 PM   #17
jastranc
 
Join Date: Oct 2012
Location: Trempealeau, Wisconsin
I have been on LDN 4.5 mg for about 18 months and it took about 2 month before it kicked in and then all was well until about 3month ago.I still take but it doesn't seen to do what it once did.My doctor want to try me on steriods to see if that might help.Had colonostopy last fall and all looks good inside.Doctor wants to Cat scan on me to see whats really going on.
03-20-2015, 03:25 PM   #18
Lovetoteach
 
Join Date: Jan 2015
Location: Thousand Oaks, California
My son went from 4 mos in 3.5mg pills to 4.5 creme for his crohns. He's been on the creme about a week. Nothing yet. Any feedback?? We're really hoping this helps!!!! He's 26 about 120...
03-20-2015, 11:02 PM   #19
JDTM
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Perhaps someone else will weigh in on this, but I have no experience with transdermal/topical LDN, so I'm not sure how it's supposed to work. Also, how was he doing on the pills beforehand? Any improvement after 4 months?
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

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

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
03-21-2015, 07:59 AM   #20
nogutsnoglory
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I thought the TD cream is an issue because it's slow release and you benefit most when it's all released at night between 9-2am.
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