LDN and Sleep Disturbance - every other day dosing?

[Jamnjm]

My 12 year old son (diagnosed w Crohns in May 2009) just finished his latest round of wiening off prednisone. He is currently taking Humira, growth hormone, and Endicort. We started LDN at 3.5mg about 3 weeks ago. LDN seems to affect him like a major caffeine jolt that has him wired and unable to sleep. We lowered the LDN dose twice; first to 1.75mg and now to .5mg, thinking we could ramp up over time time to avoid the side affects. The LDN seems to affect him the same, regardless of the dose. I think his Crohns symptoms are generally a bit better with LDN, but know that we haven't given it a long enough test to know for sure.

Has anyone tried taking LDN on a schedule other than daily? For example, I was thinking about trying every third day, or every other day for a while to see if he tolerates that.

I'm afraid that the sleep loss and general "wired" feeling are going to cause him to give up on this promising medication.

 

[Kev]

Is he taking the LDN at bedtime? I've never had a 'wired' feeling from LDN, only the odd (as in extremely detailed and real) dream. Alas, those dreams went away in short order. I only take LDN (4.5 mg) and 5-ASA (4 G), and it worked for me. I have no idea what the drug cocktail your sons combined meds might be creating, or the possible interactions. I'd suggest you discuss that with the doctors involved, maybe do as much research as you can swing regarding potential interactions. I've read on here someplace, sometime of a case where a person started LDN, but was taking it 1st thing in the day and felt 'wired' (at least that's what my memory believes, but it could be way off the mark). They switched to bedtime and all went well. I guess the question I'm left with is... your son is on all these other meds, if they are working... why switch to LDN? If they aren't working, and you want to try LDN, then why keep him on all those others?

 

[hopeful]

LDN does not need to be taken at night. If it disturbs sleep, it can be taken in the morning.

 

[MissSparkle37]

Hi Guys, I recently heard of Low Dose Naloxone (LDN) (only because a friend of mine is a nurse) and that it is being used to treat Crohn's patients in the US, however, when I mentioned this to my consultant/specialist, he had never heard of it. While I was at my appointment (December), he had a look on the internet and saw the research links which all seem to be from the US. His analysis and evalutation was that no research has or clinical trials have yet to be completed in the UK so no such gain for us just yet!..

When I had a really bad flare up in 2008, my consultant put me on 6-MP, stating he had recently been to a conference and a specialist from the US suggested using this drug as it had been used in the US for many years, with great results. Over in the UK, it is not widely used!! I cannot believe how advanced you guys in the US are with your medication, it is awesome to see/hear and read.. I now do my own research and take as much information to him as possible (may teach him a thing or two..haha)...he dreads me coming through his door thesedays.. but we have a brilliant patient/consultant relationship which I cannot fault

Gayle

 

[MissSparkle37]

Apologies for my error above guys, that should read Low Dose Naltrexone ... Naloxone is something else!!

 

[Kev]

Funny how certain words can trigger a memory. It was the 'wired' phrase that triggered a very dim memory of someone (one of the regulars from way back) who tried (and continued) taking LDN after my experiment with it seemed to work so well. So that has to be 3 1/2 - 4 years back.. And he related that taking LDN during the day make him feel 'wired' (or maybe it was 'weird').. I related how I'd started taking mine at bedtime (I think it was initially recommended by the compounding pharmacist) AND, since I'm a very heavy sleeper, I figured I could sleep thru any issues... So, I've never had a wired feeling (unlike steriods), but then again, being a heavy sleeper I wouldn't be likely to have any sleep disorder issues stemming from it. So, my personal experience doesn't prove anything. I don't recall hearing anyone (aside from your son's case) relating sleep disruption to LDN. I'd check sites like the lowdosenaltrexone website to see if anyone on there has any input or heard/related similar issues. Check the manufacturers site to see if they list sleep issues as possible/likely for people taking the standard 50 mg dose.

 

[Jamnjm]

Thanks so much for the replies. Kev, my son has never been a good sleeper. I have trouble relating because I sleep like a log. My son just recently finished wiening off prednisone for the umpteenth time. We thought we'd give LDN a try since we've never lasted too long without going back on prednisone. I believe the Crohn's symptoms had improved during the period we were on LDN, but my son begged to stop taking it. He complained of not being able to sit still at school, was very jittery at home, and couldn't sleep at night. I finally gave in and we stopped the LDN a week ago. In the mean time his health has been not great, but ok. I did get a reply to an email I sent to Dr Jill Smith (Penn State Crohn's / LDN study). She suggested trying LDN in a transdermal cream. She said that she had seen better results in kids with this delivery system. We are going to our GI next week and will run it by him. I hope to give it a try. Maybe it will avoid the side affects for my son and keep us from another round of prednisone. I'll update you as to what happens.

By the way, Kev, I've read a bunch of your posts on this site and really appreciate all that you have shared. I'm sure it takes a lot of your time, but please know that is appreciated.

Thanks again!!!

 

[Kev]

No problem. One of the reasons I pushed so (or prepared to) to get on LDN was that I live in dread my sons will develop this disease. Their genetic risk factor increases their odds of getting it ten fold. When I hear of a parent whose child has it, it strikes a nerve. I hope the cream works... or that as he ages he gets to a point where it doesn't make him feel wired. If a person gets on LDN, and it works, then one doesn't have to live in dread of the after-effects or potential side effects the other meds seem to come hand and hand with. That, in and of itself, is enough motive to give it every possible chance. Keep in touch, let us know how it goes. Maybe before you know it you will be able to add your sons success story to all of the others taking LDN.