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LJS

Joined
Feb 26, 2013
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167
Hey parents,

I would love to hear more about LDN, particularly from those of you who have tried it.. what are your thoughts?

When I bring it up to my ped GI, he calls it a "fad" (or something along those lines) and said there are no clinical studies, etc..

I'd like to give it a try, or at least research it as a possibility, before doing MTX..

thanks!
Lin
 
Hi Lin

I'm Kev. I am a parent, but my children don't have IBD.. I do. However, thanks in part to my having it, they are at an increased risk of developing it. That is (was, remains) one of the chief reasons I 'experimented' with this (your doc called it a fad??) 'FAD' FIVE years ago.. That 'fad' saved my life... literally.. and continues to keep me going/smiling. The only side effect that drug ever produced in me were some wonderful, fantastic dreams.. That was exactly what I was looking for... a safe, effective, low risk treatment in case my kids got my disease. I get a little po'ed there are so called 'professionals' out there spreading mis-information because they haven't bothered to do the research.. Wow! Who wants to be in their hands... they don't keep up with the current info.. OR.. you have some deliberately spreading bad info for fear mongering or whatever... I personally feel that should be.. made illegal.. or something. Hey, I'm not saying a doctor is deliberately misleading you, it may be just his or her incompetence..
 
Grace hasn't been on LDN BUT we will be doing this first if possible.

Calling LDN a "fad" just shows his ignorance.
Naltrexone has been around for a long while. Sure it is a somewhat new treatment for IBD as in low dose forms of it BUT it is not a fad or new.
Any drug you choose in this disease might not work or it will. We have no way of knowing until it's tried.
 
where can I get more info, do you know? And while I ADORE our GI, I have come to realize that every state/country has different standards of what they prescribe, etc...and I will push for anything that can help my child
 
Dr Jill smith did studies on pediatric LDN for Ibd
At penn state
I think she is doing more for NIH right now
You could google the studies
Jmrogers should have some of them
If your Gi calls her - maybe he can have his questions answered
There were more than a few threads on here about LDN and pediatric studies
If you do a search
 
Not sure how LDN really works but I was interested in it, not to take it but to know what it is. Would love for someone to explain it who knows more about it.

Your body has opoid receptors in your brain and gut, they've known this since forever since when you take opiates, narcotics, they interact with the opoid receptors and people get high.

But they knew the opoid receptors weren't there by accident, they weren't there for recreational drugs, they were there for another reason.....if your body has receptors for narcotics, it's not unreasonable to think that your body actually makes it's own opiates....not too long ago they found out why, your body does have it's own type of opiates, named endorphins.

Endorphins can be measured in animals when they are under extreme stress, for example when they get into a fight with another animal, the body of the animal will raise endorphins that act on the opoid receptors, it will lower the amount of pain it feels from wounds, and it interacts with the immune system because those cuts can infect the animal.

LDN blocks those opoid receptors only for a few hours, and in doing that it raises endorphins once the LDN wears off, that's why it needs to be used at a very low dose, since if you give too high a dose you would just block the opoid receptors for too long.

Also, the reason they tell peple to take it right before bed I believe, because endorphins are very active in that specific period, and if you block opoid receptors at a very active endorphin level, you will greatly increase endorphins for the rest of the day, it's that short blockade of opoid receptors that raises endorphins for the rest of the day. For a few hours at night the body is being blocked from utilising endorphins, as a countermeasure it raises endorphins, once LDN wears off after an hour or two, you now have many many more endorphins in your body than before. If you took LDN all day it wouldn't work since you would have a constant blockade of opoid receptors, if you took too high a dos it wouldn't work either because you would simply block too many receptors and the body wouldn't raise endorphins. That's why LDN is a very low dose and is taken at a time where endorphins are very active, to maximize a raise in endorphins for the rest of the day.

How it works for crohn's disease I don't understand. It interacts with the immune system and the fact we have so many opoid receptors not only in the brain but also in the gut, is why I think it works, it's also I think why people say marijuana works for CD.
 
Last edited:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://freepdfhosting.com/3818af850c.pdf
http://www.ncbi.nlm.nih.gov/pubmed/23188075
http://www.crohnsforum.com/showthread.php?t=43264
They are also working on a Phase III trial, TNI Biotech has purchased the orphan patent rights
We have just started our 11th month on LDN and I hope this "fad" continues to work as well as it has. Jack's GI wanted to give it a try as we were not seeing 100% with Imuran, we just couldn't get over that final hurdle, the smallest thing like not getting enough sleep would tip him over into a mini flare. We tried methotrexate but Jack had a reaction to it, but he GI and myself were not ready for biologics wanted to keep them in our back pocket for if we really needed them.
The GI put several patients on LDN and I will say that Jack was the only on doing really well and the GI was about ready to give up and say it doesn't really work. But Jacks scopes in Feb. showed healthy tissue no sign of active disease, blood levels all normal, the GI was thinking that it was just a fluke but I asked him where/how was the LDN being compounded, what fillers were they using, did they make sure it was quick release formula, slow release doesn't work, were they taking it right before bedtime (Jack takes it a 9pm). He was not aware of any of this so he had me send him the info I gave to the pharmacy about compounding and the instructions and is willing to try again.

That is one of the problems is since it is not a "common" treatment the GI's do not necessarily know the correct way to administer. Jack received the Rx a month before we started, he was going to camp and we didn't want to "mess" anything up before that so I spent the month researching. I will say the only error we made was LDN takes a while to work and I would have kept him on Aza for the first 3 months. We experienced a pretty bad flare about 3 weeks in and we did a modified Paleo/SCD diet for the next 2 months and then gluten free for another 2 months. He eats pretty much whatever he wants now, however he does drink 2 peptide everyday.
You have to do what is right for you, your son and your family but I personally can not say enough wonderful things about LDN. Jack is growing like crazy, has tons of energy, color in his face, only has 1-2 normal BM's a day. The little stresses of life don't throw him into a flare anymore,
 
I think if 6mp does not work, I will push for LDN at least to try before the others. I know in Scotland they are doing a trial in treating kids with LDN in Dundee, but it is quite recent, so no news on how that's going yet.
 
Here is what I received from my ped GI, when I asked again about LDN - thoughts??

"There are a lot of factors that go into our interpretation of existing studies. We are aware of this and other naltrexone studies in adults – so why might you ask are there not more children/adults on this medication based on the study? Several reasons - 1. The mechanism is still unclear, giving us pause. 2. 8 weeks of study time are insufficient to understand the true effect of the medication. 3. Has not been studied in a population large enough to reasonably make conclusions regarding safety or effectiveness (in this study there were only 14 patients).


We can discuss this in more detail."
 
All true, thus the need for phase III trials. However Naltrexone itself has been used for many years in much larger doses with minor side effects listed which is why Jack's GI was willing to prescribe it.
He in fact said the same things as your son's GI but thought it would be worth giving it a try, he however left it up to us. Remicade or try LDN. I read the studies and read peoples' stories on here about both their successes and failures with LDN and decided to give it a try.
Do I worry about future unknown side effects - Sure but I think we see that with so many drugs even ones that have been approved that we find out down the road that it causes some serious issues (i.e. the recent lawyer's commercials for YAZ). But I am somewhat comforted to know that it has been in use for many years and if there were going to be serious side effects wouldn't they know by know. Again I have to agree with #1, we don't know how/why it works with Crohn's so is there something we are missing that may cause problems down the line.
So just like all the other treatments for Crohn's out there you have to weigh both sides of the issue and do what is best for your situation. Not an easy thing - which is why I love this forum where I can get lots of feedback to help me make the best choice for us. \
Best of luck whatever treatment you decide, I hope it brings many years of remission.
 
If LDN is used in adults mainly...can it ever go the other way. Biologics then LDN? Everyone talks about the order of things...why does LDN have to go before biologics? Also, does your crohn's have to be mild for LDN to work?

I agree that they don't know long term side effects for children with a lot of the drugs.
 
You can try ldn after biologics, people just usually try it before having to go to the strong meds but there are those that have done ldn after a humira or Remicade
 
? Also, does your crohn's have to be mild for LDN to work?

I agree that they don't know long term side effects for children with a lot of the drugs.

Jack's is classified as severe and is located pretty much from duodenum to anus, with high probability of fistulizing disease and it is working really well for us so far. So no I don't believe it has to be mild for it to work but again even though Jack is on it, I would love for more testing to be done.
 
When doctors state the '18 in the studies' they aren't including all the kids here that its working for. I wonder why doctors are so reluctant and the scientists are reluctant to run studies...They sure push all the other meds with no problem. And push steroids too. Just doesn't make sense. I hate when the GI's don't have good answers. I'd love to find a pediatric GI that also has a child with crohns.
 
I asked our GI about LDN today. He said he's not convinced it works well for pediatric Crohn's based on the few studies he's seen and would recommend other drugs first that he knows work, BUT also said that if we were to run out of options, he'd be open to trying it. He does have one patient using it, but so far it's not working for them.
 

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