Dose & time

[dannysmom]

Hi.
We had our GI appointment today and the dr mentioned having Danny try LDN. (He said he had one patient that it helped and one patient that it did not impact.) Danny has tried LDN before, over 2 years ago it was prescribed by an alternate MD, and we stopped (after about 1 month) because it did cause some sleep & dream issues and we really did not see any benefit. I realize now that we should really try it for 4-6 months.

I am wondering what dose we should try & when to take it. (Our GI admits he needs to research this for us.) I am not sure what dose he was given 2 years ago but will try to find out. I read that for those with sleep disturbance, starting with a lower dose and ramping up may be better.

Everything I am reading (except for forums) seems to say LDN will work best when taken between 10PM and 2AM. In forums, people are saying that the Penn St. researchers now say taking it in the AM is OK too. Are there any articles on dosing time?

thanks

 

[Clash]

Just from the research on here I've done I would think Kev could help you out with that one.

 

[Kev]

Dannysmom

Based solely on my personal experiences with LDN, I'd suggest taking it just before bed. The absolutely only side effects I ever experienced with it was the occasional vivid dream.
Sadly, that didn't last long (imagine complaining because the only side effect didn't last).
I took 4.5mg from the get go. I have heard (annecdotally) of dosages at 1.5 or 3.0mg. I've no information whether either of those dosages were used in any clinical trials. The absolutely crucial thing is the source of the LDN. It has to be the correct form of the drug (Naltrexone, NOT Naltrexone SR), it has to be properly compounded, the right type of filler/binder is important, and the compound should be fresh. I never use any pills that are more than 90 days old. There is a good chance that Danny will feel worse before he feels better. I don't know if any expert (and I'm no expert of any kind) really KNOWS how this drug does what it does. I've heard 4 hour rebound effect, receptor blocking, etc., BUT my personal take is that somehow this drug breaks the vicious cycle whereby Crohns turns the immune system against us... and allows our immune system to slowly fight off this disease. That takes time... and the amount of time depends on how sick we are when we start that fight. Now, my personal take on this could be way off the mark. And I don't have a shred of proof or any medical training or scientific knowledge to back up my belief. So, I guess a little faith is required. But I know what this pill did for me. And all I had to worry about was the occasional dream. One final thought. Your GI brought up LDN on his own, out of the blue? Hang onto that doctor with all your might

 

[dannysmom]

Dannysmom
... One final thought. Your GI brought up LDN on his own, out of the blue? Hang onto that doctor with all your might

Thanks for the quickly reply Kev. Yes, our GI brought up LDN and SCD today. We do love this GI as he is open to new ideas and is very, very caring. It is sort of odd that Danny tried both of these 2 years ago - but each for only 4-5 weeks. LDN is so much easier to try again and this time we will give it more time. We live in NY so I think getting it from those pharmacies may be easiest.

Danny is not diagnosed w Crohn's ... but his immune system could definitely use a jolt. Just like some threads in this sub-forum, any time Danny gets a cold or virus, his symptoms get so much worse -and he has a hard time shaking some viruses.

Thanks again!

 

[Tesscorm]

Wishing you lots of luck, Jeanne!!! I so hope that this can bring Danny some relief! :ghug: