Resource Low Dose Naltrexone for Autoimmune Disorders by Chris Kresser

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Nice overview by Kresser - this is a transcript of the video - see the video here. Review LDN here

From the transcript:
The effectiveness of LDN
OK, so what conditions is LDN effective for? There are actually two ways to answer this question. The first is what the scientific literature shows, and then the second is what clinical and anecdotal experience of clinicians that are working with LDN shows. There’s definitely research out there on LDN, but it’s still somewhat limited, and I think clinical and anecdotal experience is further ahead in terms of the breadth of conditions that LDN is being used for and the experience of how effective it can be for those conditions. The studies are also still usually relatively small sample size, not always randomized, not always double-blinded. Part of the reason for this is they’re probably not that well-funded because low-dose naltrexone is off patent, and that means that drug companies don’t stand to make a killing on selling LDN, and it’s unlikely that a whole lot of money is going to be put into it for that reason.

One of the disadvantages of LDN is that there’s still not standardized dose, and really the patient and the prescribing physician just kind of have to figure it out through trial and error. From our experience, we’ve seen most people end up around 2.5 mg to 3 mg; 4.5 mg tends to be too much for people. I’ve seen some patients settle on as little as 1.25 mg or 1.5 mg, but anywhere in the 1 mg or 1.25 mg to 4.5 mg range could be the optimal dose for a given person.
 

JennyJenny

Well-Known Member
I use LDN and it helps with sleep, pain and the flu like symptoms. I am still very sick and disabled but it does help. I take Zolpidem and Gabapentin to help with sleep also but when I added LDN my sleep was calmer (if that makes any sense) and that no doubt helps the body get more restorative sleep (relative of course as it is far from perfect) so other symptoms are less severe.
 

Who Me?

Well-Known Member
For me even a tiny dose of LDN,.5 Mgs, kept me up all night. After 3 days of getting no sleep I started taking it in the morning. Many people take it then because it can screw up sleep.

I'm not sure if it's helping me at all Although I know others who do have good results.
 

omrider

New Member
For me even a tiny dose of LDN,.5 Mgs, kept me up all night. After 3 days of getting no sleep I started taking it in the morning. Many people take it then because it can screw up sleep.

I'm not sure if it's helping me at all Although I know others who do have good results.
LDN works in a manner that it must be taken at night from what I understand.. I have yet to find any info on it being effective if taken during the day. I recently took a break from LDN to see if it was doing anything and to my surprise my pain levels returned to a much higher levels..so, back on it as of this evening to see if it truly was the lack of LDN or another cause. I also notice that my "Sjogren's symptoms"(dry mouth/eye) returns when I go off LDN...so, for me it seems to be an effective treatment. I take 4.5mg compounded each evening...as far as my sleep, I get such varied sleep, but it is better or deeper on LDN, I enjoy the dreams for the most part. I heard it matters how well it is compounded..for example, tried to have a pharmacy in Brazil copy the formula while I lived traveled there, but I don't think it was nearly as effective.
 

Who Me?

Well-Known Member
There's information that Ldn can be taken in the morning for people who have sleep problems from it. Particularly us.

There is an endorphine Rush in the morning which is why it works then. Maybe not as well but some get a benefit.

I get 50 mugs and crush them. There was no difference between that or the expensive compounded for me. No sleep on either.

I'd love some crazy dreams. I get zero sleep. Nada Nil nothing.

There is an ldn website that tells what fillers are best since some are not good.

http://www.lowdosenaltrexone.org/
 

omrider

New Member
There's information that Ldn can be taken in the morning for people who have sleep problems from it. Particularly us.

There is an endorphine Rush in the morning which is why it works then. Maybe not as well but some get a benefit.

I get 50 mugs and crush them. There was no difference between that or the expensive compounded for me. No sleep on either.

I'd love some crazy dreams. I get zero sleep. Nada Nil nothing.

There is an ldn website that tells what fillers are best since some are not good.

http://www.lowdosenaltrexone.org/
I'm no expert to be sure and you are probably right about it still having benefit for daytime users...

Yes, dreaming again and getting some REM sleep is huge, but I still wake up non-restored like most in this CFS world. It costs about $40 a month here in Oregon to get my LDN compounded at very reputable place...

I understand completely trying to save and do it on your own, but I don't trust myself to get it right. It will be interesting as I go back on LDN tonight and see if I can monitor how it effects my sleep amongst other symptoms...

it is always so hard when I'm on so many protocols to pick out what is working and not working and what is just a fluctuation in my normal symptoms...

If my Sjogren's symptoms improve and my pain lowers(flu like joint/muscle pain), after going back on(trying not to change anything else), I'll finally have my N=1 study on how LDN works for me...

I'll hope like all meds into isn't a lifetime thing, but if it works and isn't damaging, I'll have to continue it.

Has anyone heard if taking LDN would change one's ANA results?

I've never tested positive on an ANA, despite suspicion by my doctors of autoimmune condition...

I was wondering if the immune modulating effect of LDN could effect these tests and if it is best after a break from it?
 
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Who Me?

Well-Known Member
I can't read all this in the phone but what I do is crush a 50 mg. then dump it in 50 ml water and put them in a glass bottle in the fridge.

Each day I use a syringe snd draw off what I want so it's petty accurate. It's good for s month.

Last time I got it compounded in CA it was $100 for 90 of .5 mgs. Just can't.

Have you checked into Skips pharmacy in fla? Lots of people use them. They have they have good prices.

I just can't justify the expense when I have other things I need. Like food.

Oh and you should see what I have to take for sleep and I still don't. So add ldn and 3 days of zero sleep? Omg.
 

Who Me?

Well-Known Member
@omrider I'm on a mission to get people to put more paragraph breaks in posts.

Can you go back and edit your first paragraph so I can read it. One look and everything in my brain fires.
 

omrider

New Member
I can't read all this in the phone but what I do is crush a 50 mg. then dump it in 50 ml water and put them in a glass bottle in the fridge.

Each day I use a syringe snd draw off what I want so it's petty accurate. It's good for s month.

Last time I got it compounded in CA it was $100 for 90 of .5 mgs. Just can't.

Have you checked into Skips pharmacy in fla? Lots of people use them. They have they have good prices.

I just can't justify the expense when I have other things I need. Like food.

Oh and you should see what I have to take for sleep and I still don't. So add ldn and 3 days of zero sleep? Omg.
Thanks for info, I hear ya, affordability is crucial and food is IMPORTANT :) I'm going to call skips this week and get prices, hoping i can save even a few $$$, it all adds up. Good luck!
 

Who Me?

Well-Known Member
I have an email with some of skips pricing I'll try to remember to hunt for it tomorrow but I think its lower doses. I'm pretty sure it's less than what you are paying.

I do know he charges for shipping.

Oh another place I used is Harbor Conpounding pharmacy. Mike is awesome and will work with you price wise. My NP uses them.

http://www.harborcompounding.com/
 

JennyJenny

Well-Known Member
For me even a tiny dose of LDN,.5 Mgs, kept me up all night. After 3 days of getting no sleep I started taking it in the morning. Many people take it then because it can screw up sleep.

I'm not sure if it's helping me at all Although I know others who do have good results.
I know I had to start on a real low dose like 1.5 mg. You had to take the 4.5 mg and separate into thirds and take for two weeks and up by 1/3 for another 2 weeks and then by week 4 you could up by the last 1/3 because yes you will get that rush. Taking during the day made no difference for me with energy or pain, etc. so for me it is night but I know how we are all so different with our medications.
 

Who Me?

Well-Known Member
I had to start on .5 and I had a problem with that. Had to start and stop a few times.

I've never had a rush from it, even when I tried taking it at night. My brain was just wide awake. Nothing got me to sleep.

The only way to know if its helping 's stop it and see. I'll see how I feel about it.
 

JennyJenny

Well-Known Member
I had to start on .5 and I had a problem with that. Had to start and stop a few times.

I've never had a rush from it, even when I tried taking it at night. My brain was just wide awake. Nothing got me to sleep.

The only way to know if its helping 's stop it and see. I'll see how I feel about it.
OH! .5 and you still had a problem. Well, I am taking Zolpidem with it so I know it is the Zolpidem punching me out or at least it used to now it just eases me into sleep and I am on the men's dosage taken 5mg at 6pm and 5mg at 8pm and I would have to get to bed by 9 but now I am lucky if it will start putting me to sleep by 10. LDN did not disrupt my Zolpidem as I took them together for a good year or more but I think after taking Z for a few years my body is adjusting to it. I can't take all 10 mgs. of Z at once as I am unable to walk straight yet it won't make me tired for sleep for a few hours and then I will only sleep a couple of hours. So splitting it at least gives me 3-4 hours sleep.
 

Who Me?

Well-Known Member
I take a combo of about 4 or 5 things at night to sleep including Zolpidem. NOTHING gets me to sleep on LDN.

Please put paragraphs. I can't read most of that, just words I can pick out.
 

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