Ldn
- Thread starter farfalle5
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LDN has very few risks. There are a number of members here, including Jmrogers4 's and Kimmidwife 's children who have found success with it. However, there are very few studies of its use with crohns and very few GIs are willing to prescribe it. 
I very much wanted to try LDN for my son before he moved onto remicade but his GI was adamant that we needed to get the inflammation under control and was not willing to prescribe LDN. GI didn't want to risk that the inflammation would eventually lead to surgery and neither did my son... as my son was 18, I shared the info I had about LDN and remicade but didn't feel comfortable convincing him to go against his GIs recommendation and let him make his own decision.
Please read through the LDN subforum (under treatment) - there will be lots of info there. Speak with your daughter's GI - as I said, he/she will probably not be comfortable with it because of the lack of studies (I believe there are only three small studies, one of which involved children. The studies showed positive results but were done with a very small number of participant. But, I believe there is another company currently working towards another study.)
Good luck!
I very much wanted to try LDN for my son before he moved onto remicade but his GI was adamant that we needed to get the inflammation under control and was not willing to prescribe LDN. GI didn't want to risk that the inflammation would eventually lead to surgery and neither did my son... as my son was 18, I shared the info I had about LDN and remicade but didn't feel comfortable convincing him to go against his GIs recommendation and let him make his own decision.
Please read through the LDN subforum (under treatment) - there will be lots of info there. Speak with your daughter's GI - as I said, he/she will probably not be comfortable with it because of the lack of studies (I believe there are only three small studies, one of which involved children. The studies showed positive results but were done with a very small number of participant. But, I believe there is another company currently working towards another study.)
Good luck!
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Low dose naltrexone. Yes it would replace all the other meds. It does not appear at face value to have all the side effects currently they say sleep disruption, vivid dreams but although the drug has been around for many year and used in much higher concentrations there have not been a lot of studies done for use with crohns. A company did buy the orphan patent rights and is planning a phase iii trial next year.
Jack has been on it for about a year and a half and has seem fantastic results, scopes done last February should pink healthy tissue and labs were completely normal.
We did just have a flare I believe brought on by c diff but it appears the ldn is doing is job and he feels great again.
Ldn is said to work with your endorphins and I'll find the papers and links when I get to a normal computer and am not on my phone.
Jack has been on it for about a year and a half and has seem fantastic results, scopes done last February should pink healthy tissue and labs were completely normal.
We did just have a flare I believe brought on by c diff but it appears the ldn is doing is job and he feels great again.
Ldn is said to work with your endorphins and I'll find the papers and links when I get to a normal computer and am not on my phone.
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Here is pdf of the LDN study in children done by Dr. Jill Smith. My understanding is you take a small dose of LDN at night and it turns off your endorphins for about 4 hours and when the body starts to make them again it makes even more which for whatever reason allows the body to heal itself - again this is my theory based on the information I read in the studies. How it really works I just don't know but one thing to keep in mind is it does cross the blood/brain barrier and it a consideration in kids with developing brains. Don't get me wrong I love LDN and how it has made my son feel but just like all the other drugs out there you need to the full picture to make an informed decision.
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Hi,
My Grace is on LDN. She's been on it for 6 months plus. We're still debating if it's worked for her but at least if it hasn't we can say we tried.
Now Grace was in a good spot, near remission. That's why we wanted to try LDN. LDN does take a few months to work and does cause a flare at first, for some. So be warned it might get worse before it gets better.
HUGS
My Grace is on LDN. She's been on it for 6 months plus. We're still debating if it's worked for her but at least if it hasn't we can say we tried.
Now Grace was in a good spot, near remission. That's why we wanted to try LDN. LDN does take a few months to work and does cause a flare at first, for some. So be warned it might get worse before it gets better.
HUGS
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I had asked our GI about LDN because it has few side effects. He was not impressed by it at all (don't think he's tried it) and seems to believe it doesn't work very well. I believe they are doing a study at a children's hospital a few hours away, but he didn't know how that was going.
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Like Sascot, our GI wasn't too impressed when I brought up LDN. He said that there just haven't been enough studies on children in particular for him to feel comfortable trying it with his pediatric patients. He said he'd rather try the traditional meds that he knows have been studied in kids (6MP, Remicade, etc) first, and would save LDN for when someone is out of tried and true options, hoping by then that there is more documented research.
I think his biggest concern was crossing the blood/brain barrier like Jmrogers mentioned. He said he would have no problem trying it on an adult, just not kids. That tells me there might be some merit in it, but it also makes GI's nervous.
I think his biggest concern was crossing the blood/brain barrier like Jmrogers mentioned. He said he would have no problem trying it on an adult, just not kids. That tells me there might be some merit in it, but it also makes GI's nervous.
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Our Gi was willing to try LDN but said the clinics he had seen it in only saw a little improvement for very mild cases to nudge them in the right direction- but not for moderate to severe cases .
We opted to not try it at that point since DS had been struggling for so long.
Also realize endorphins play a role in mood. And muscle function .
Too much endrophines are found in kids with Tourette's , bipolar disorders etc..,
So...
We opted to not try it at that point since DS had been struggling for so long.
Also realize endorphins play a role in mood. And muscle function .
Too much endrophines are found in kids with Tourette's , bipolar disorders etc..,
So...
We thought about LDN when it looked like Humira wasn't doing its thing anymore. Like MyLittlePenguin, We also didn't want to try something that we also were told was for Mild cases when our son has been struggling with inflammation for 14 months and with growth issues his whole life. With us on the bubble of puberty, I didn't want to waste anymore time.
I didn't bring it up when we went to Mayo...and he didn't either...So that confirmed it with my husband and I.
I didn't bring it up when we went to Mayo...and he didn't either...So that confirmed it with my husband and I.
Kev
Senior Member
I think there is a general misconception about LDN and treating only mild cases with it.
The initial Penn State study only used subjects with mild to moderate disease in their trial. I mean, would you ask someone with severe disease to volunteer when it means they would have to come off all other medications? A very big gamble for them to take.
I had a severe case. To illustrate how bad it was, just take a look at the internal scarring photos I posted... the disease did that to me in less than 3 months... plus mine was a rare combo of Crohns and Ulcerative colitis. Spread like wildfire. When I started LDN the only other medication I was on was 5-ASA. I'd been taking it for a couple of years and it did absolutely nothing... but at least it was (although I 'believe' it no longer is) approved for treating IBD. Despite the severity of my case, LDN stopped both in their tracks in less than 3 months. So, you CAN treat severe IBD with LDN... you just have to be extremely brave, extremely foolish, or extremely desperate to try it... and to tuff out the startup.
As for the risks of using it on children... I can't provide anyone with a pat answer there. I know that... when it comes to children... the 'fear' of what might happen to them is a real thing. It may look like an intangible, but it is real. Is there a possible issue? I don't know.
I DO know that one of the fundamental, primary reasons I gladly played lab rat with LDN was my fear that my children might develop this disease... AND the 'known' side effects of the other meds that doctors might use on my children scared the living daylights out of me. Hell, it scared me when they wanted to use them on me... I know first hand what the consequences of those side effects CAN be. Believe me, you do not want your kids to go thru what I went thru...
All I can tell you is... LDN does work with severe cases. I have been using full strength LDN for 6 years now... every night... and zero nasty side effects to talk about. I would suggest to anyone.... look at the 'known' risks of the various meds... make your choice based on what you know... AND if someone (anyone) suggests you fear what isn't known, then that basically boils down to just plain fear mongering. There is no science behind it.
The initial Penn State study only used subjects with mild to moderate disease in their trial. I mean, would you ask someone with severe disease to volunteer when it means they would have to come off all other medications? A very big gamble for them to take.
I had a severe case. To illustrate how bad it was, just take a look at the internal scarring photos I posted... the disease did that to me in less than 3 months... plus mine was a rare combo of Crohns and Ulcerative colitis. Spread like wildfire. When I started LDN the only other medication I was on was 5-ASA. I'd been taking it for a couple of years and it did absolutely nothing... but at least it was (although I 'believe' it no longer is) approved for treating IBD. Despite the severity of my case, LDN stopped both in their tracks in less than 3 months. So, you CAN treat severe IBD with LDN... you just have to be extremely brave, extremely foolish, or extremely desperate to try it... and to tuff out the startup.
As for the risks of using it on children... I can't provide anyone with a pat answer there. I know that... when it comes to children... the 'fear' of what might happen to them is a real thing. It may look like an intangible, but it is real. Is there a possible issue? I don't know.
I DO know that one of the fundamental, primary reasons I gladly played lab rat with LDN was my fear that my children might develop this disease... AND the 'known' side effects of the other meds that doctors might use on my children scared the living daylights out of me. Hell, it scared me when they wanted to use them on me... I know first hand what the consequences of those side effects CAN be. Believe me, you do not want your kids to go thru what I went thru...
All I can tell you is... LDN does work with severe cases. I have been using full strength LDN for 6 years now... every night... and zero nasty side effects to talk about. I would suggest to anyone.... look at the 'known' risks of the various meds... make your choice based on what you know... AND if someone (anyone) suggests you fear what isn't known, then that basically boils down to just plain fear mongering. There is no science behind it.
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Caitlyn's Crohn's was labeled moderate to severe when she went on it. Her intestines looked like raw bloody hamburger in the pictures we saw. Within six weeks she was feeling well enough to go back to school. Within three months she went on a trip abroad with no issues. Her scope last November ten months after she started the LDN look like healthy mucosal tissue. She has been having some issues lately but all her Crohn's studies are normal and show her Crohn's to be in remission. Th. is why we think we may be dealing with something new that we are still trying to figure out.
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Wendles
Keeping my fingers crossed and praying for good results for your son!!!!
Keeping my fingers crossed and praying for good results for your son!!!!
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I've used LDN with no positive results. It should be mentioned that you should check with your doctor and pharmacist before taking it if you are already on other medication, especially opioid painkillers like morphine as the LDN will block the effectiveness of those drugs.
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We've tried LDN both oral and transdermal several times but to no effect unfortunately. The thing is that it can take time to work while you may be delaying other treatment (but I suppose that's the same as waiting for any med to work). The thing that I find annoying about LDN is that if you try it for 9 months and it does nothing the response is "you didn't try it for long enough" or "you need to do it with a diet" but if you're one of the lucky ones it works for then it's really a great choice. Good luck if you try it.
