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New on LDN

hello all,

My name is David, I am from Israel.
I was diagnosed with Crohn around 4 years ago (located in the terminal ileum), never took any medicine for it, just made nutrition adjustments that helped.
I feel ok, however the blood tests are not so good (CRP, ESR, Anemia etc)and MRI scan shows there is an inflammation and thickening of several intestine loops (around 20 cm is inflammatory).

I got LDN prescription a few days ago and about to start taking it.
the Doctor's intructions were to start with 1.5mg for 2 weeks and then raise to 3mg for another 2 months and then he will decide if it is needed to raise to 4.5mg.

Looking around I saw that 4.5mg is recommended dosage, so I am quite confused.
The doctor said he wants to raise the dosage gradually in order to see that there are no side effects etc...

I will appreciate hearing your opinion
what is the dosage most of the Crohn's LDN users take etc...

thank you.
 

Kev

Senior Member
David

The doctor is being cautious, most likely because LDN is considered controversial. Thing is that, at the dosage he is suggesting, I really don't think it is sufficient to trigger the 'rebound' effect. Without it, you aren't going to see results. The doctor may suggest it isn't working, and try to put you on a traditional med...

Unless you are physically the size of some of the children in the paediatric study, then my advice is to go with the dose used in both adult studies... 4.5mg. It is a very small dose.

You may have side effects... vivid dreams... or sleep disruptions.. or a feeling of being 'wired'... That is pretty much the extent of the known side effects of the 4.5mg dose. I have been taking 4.5 mg of Naltrexone every nite since November of 2007. The only side effect I ever had were some wonderful vivid dreams. Sadly, they didn't last. I did have some sleep disruptions that I 'THOUGHT' were due to LDN, but turns out they were from nicotine withdrawal. In any event, the known side effects won't jeopardize your life, etc.. May disrupt it a bit (if you have any at all)... but they are all tolerable.
 
Hi Kevin,

Actually I weigh only 128 pounds, so that's more or less a weight of a child...
The doctor is very into LDN, however he said he wants to increase it gradually.
he said that if after 2 weeks of taking the 1.5mg dose, I will feel ok, he will increase it to 3mg (so thats only 2 weeks). however from 3mg to 4.5mg dose, he says he will wait another 2 months.

what do u think? considering my weight etc... can 3mg dose do the job? or should I press on him to increase it to 4.5mg ?

and what should I expect from LDN if it works ? to lessen my CRP and ESR levels ? to heal my intenstine and the thickening of the loops ?
 

Kev

Senior Member
David

I'm 6' 3", normally about 235 lbs.... but, at the time I went on LDN I was just under 170. I don't have the formula for how they 'computed' the dosage for kids (anyone out there who knows it or can link to it, please jump in)... but I believe a parent did some math on it and their 'child' dose was .. I'm guessing here (my memory is shot) 4.1 mg....

I don't know if 3 mg will trigger the rebound effect. That may be something you can find out at lowdosenaltrexone.org (the last time I visited the site... 2007.. it wasn't friendly)

If it doesn't trigger the 'rebound' effect... it won't have any beneficial effects. At least that is my 'guess'. And if it isn't benefiting you... the disease can do quite a number on you while in this 'limbo'... So, in this scenario, it might be very, very detrimental. You know?
 
Hello all...

I wanted to update regarding my LDN progress and hear what is your opinion regarding my situation.

I started taking LDN 3 months ago.

I took 1.5mg dose for 2 weeks, than moved to 3mg dose for 1 month, and in the last 1.5 months I have been taking the 4.5mg dose.

I didn't feel any change when I took the 1.5mg and 3mg doses, except some vivid dreams.
However, about 10 days or so after taking the 4.5mg dose I am feeling my digestive system is going through something. (sorry in advance for the details...)
I wake up every night, even a few times a night, usually between 1:00 - 4:00 in the morning with the need of giving feces and go to the toilet for this purpose (before that I never woke up in the night for this purpose).
also right after I wake up in the morning (at about 6:00 am during the weekdays) I need to go to the toilet (before, I went only at about 8:30-9:00).
Another thing is that the form of the feces has changed from sausage shape to smaller pieces and also some dripping and sometimes constipation feeling.
during the day hours things are better but the nights and early mornings are very hard to deal.

I feel that the things I described is a worsening.

please help!

thank you.
 
My daughter just started LDN and she is starting very slowly. She is trying 1.5 every other night. If no side effects go to 1.5 every night. Her weight is about 120 and I read that the maximum dose she should be on is 3 mg. last time she tried LDN she went to 4.5 pretty quickly and ended up in the hospital with CDiff. So we are being very cautious this time.
 
Kev and others exprienced with LDN...
I would really appreciate if you can respond to my post regarding my LDN situation and the phenomenons I am expriencing...

thank you very much!
 
From what I experienced on LDN it seems to get worse before it gets better. I seem to remember others saying the same thing.
 

Kev

Senior Member
I'm no expert. no medical training or qualifications of any sort. For an adult, I would not count any time spent on less than the dosage of the adult studies. Unless you hear from one of the medical experts in this field saying otherwise. Now, in the initial stages, which I'd estimate to be up to 12 weeks... you probably will experience a worsening of your symptoms before any improvement is noticeable. Any improvement will probably be very minor... very slow... almost imperceptible at first. So, if things are getting worse, this is what a lot of us went through. And, there is no guarantee that LDN works for everyone.
 
Thank you Superzeeman and Kev for your comments.

I will try to pass this tough period.
were you familiar with the symptoms I described?
every night I am waking up at least 1-2 times to the toilet...
 
My daughter with UC started taking LDN 3 weeks ago. 1.5 mg. every other day and is doing really well on it. One normal BM a day and no blood in stool! She is tapering pred. and is currently on 16 mg. I am reluctant to change this protocol. I think because she hasn't been off pred for a year that this low dose is working very well. According to the weight chart(120 lbs.) her top dose should only be 3 mg. has anyone else experimented with every other day dosing? Also any suggestions for the safest way to taper pred on LDN?
 
I am 5'4 107lb female -- I started at the full 4.5mg. My doctor said because it's such and incredibly small dose of the lowest starting dose of the full medication (I hope that makes sense) that he didn't see an issue starting at that dose.

I couldn't sleep at all the first night but that has resolved. Unfortunately I have been in a flare - but I'm pretty sure the flare started right before I started the LDN. Otherwise, I have had no other effects from it. I've been on it since June 6.
 
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