Low dose Naltrexone

Kenny Banya

Senior Member
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Australia
About to start 1.5mg, then 3mg, then level out at 4.5mg
Have other people taken this path & what did you notice when started & then as it increased?
 

Sushi

Moderation Resource Albuquerque
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About to start 1.5mg, then 3mg, then level out at 4.5mg
Have other people taken this path & what did you notice when started & then as it increased?
We all seem to react differently and you didn't give your time line but it took me 4 months to get to 4 mg with a few days of difficult symptoms each time I bumped up the dose.
 

Kenny Banya

Senior Member
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356
Location
Australia
We all seem to react differently and you didn't give your time line but it took me 4 months to get to 4 mg with a few days of difficult symptoms each time I bumped up the dose.
Sorry, the interval bumps up at week 4 & then week 7
Was there an ideal level for you & what did you experience?
 

Sushi

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Sorry, the interval bumps up at week 4 & then week 7
I found I couldn't follow a pre-set schedule. I'd wait until the symptoms went away and then another week, then I'd bump up by .5 mg.
Was there an ideal level for you & what did you experience?
At first I went to 4 mg and that was good for a while (good meaning mild but noticeable improvements in symptoms across the board), then later I became groggy during the day and went down to 3 mg where I've stayed for the last couple of years.
 

purrsian

Senior Member
Messages
344
We all seem to react differently and you didn't give your time line but it took me 4 months to get to 4 mg with a few days of difficult symptoms each time I bumped up the dose.
What were the difficult symptoms you experienced at each bump?

I started at .5mg about 1.5 months ago and went up to 1mg the night before last. I was meant to bump up sooner, but I had about a week there with no tablets (couldn't see doc over xmas) so she recommended I stay on .5mg for an extra 2 weeks to ensure all went smoothly. I haven't had much in the way of side effects, but the first day after bumping it up I was quite sleepy all day.

My first 2 weeks on LDN, I had a slight but noticeable improvement in fatigue and PEM. Went back to pre-LDN levels after that (which was quite bad) but I've been improving again slight over the past week I think. I think xmas period brought my symptoms back a bit, hopefully will continue improving (or at least remain at this slightly better level). I have noticed that my evenings are now the best time and am staying up later than usual, although I don't have problems getting to sleep once I go to bed. My sleep seems better quality too. I used to go to bed at 9, now it's more like 11. I feel my best around 9pm till 11pm. I've started taking my LDN at around 8pm now instead of between 9 and 10, hoping that will bring the good period back a little earlier so I can make more use of it.
 

Kenny Banya

Senior Member
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356
Location
Australia
What were the difficult symptoms you experienced at each bump?

I started at .5mg about 1.5 months ago and went up to 1mg the night before last. I was meant to bump up sooner, but I had about a week there with no tablets (couldn't see doc over xmas) so she recommended I stay on .5mg for an extra 2 weeks to ensure all went smoothly. I haven't had much in the way of side effects, but the first day after bumping it up I was quite sleepy all day.

My first 2 weeks on LDN, I had a slight but noticeable improvement in fatigue and PEM. Went back to pre-LDN levels after that (which was quite bad) but I've been improving again slight over the past week I think. I think xmas period brought my symptoms back a bit, hopefully will continue improving (or at least remain at this slightly better level). I have noticed that my evenings are now the best time and am staying up later than usual, although I don't have problems getting to sleep once I go to bed. My sleep seems better quality too. I used to go to bed at 9, now it's more like 11. I feel my best around 9pm till 11pm. I've started taking my LDN at around 8pm now instead of between 9 and 10, hoping that will bring the good period back a little earlier so I can make more use of it.
So naltrexone doesn't induce insomnia?
I am about to start tonight & I don't want to have trouble going to sleep, after a couple of bad nights.
 

purrsian

Senior Member
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344
So naltrexone doesn't induce insomnia?
I am about to start tonight & I don't want to have trouble going to sleep, after a couple of bad nights.
It does induce insomnia in some people, but I've started on an extremely lose dose and am increasing it very slowly because I'm usually quite sensitive to drugs. I've read about other people experiencing better sleep on the right dose of LDN. I think it only causes insomnia if you're on too high of a dose or starting high without getting used to it?
 

Kenny Banya

Senior Member
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356
Location
Australia
It does induce insomnia in some people, but I've started on an extremely lose dose and am increasing it very slowly because I'm usually quite sensitive to drugs. I've read about other people experiencing better sleep on the right dose of LDN. I think it only causes insomnia if you're on too high of a dose or starting high without getting used to it?
Thanks.
Do you take it in the morning or evening?
 

purrsian

Senior Member
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344
Thanks.
Do you take it in the morning or evening?
Evening, that's what is usually recommended unless you get the insomnia. Around 9-10pm is the usual recommended time so that it gets the most effect in the early hours of the morning, when endorphin production is highest. I take mine at around 8pm as I'm trying to see if that brings my "good period" a little earlier rather than from 9pm-11pm.

Just try not to stress over insomnia or if you're staying awake a little longer than usual - I now stay awake later, but fall asleep easily once I start to get sleepy. I thought worrying over insomnia at first would increase the likelihood of me getting it, but I still didn't :) Only on 0.5mg though, which is lower than usual.
 

Kenny Banya

Senior Member
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356
Location
Australia
Evening, that's what is usually recommended unless you get the insomnia. Around 9-10pm is the usual recommended time so that it gets the most effect in the early hours of the morning, when endorphin production is highest. I take mine at around 8pm as I'm trying to see if that brings my "good period" a little earlier rather than from 9pm-11pm.

Just try not to stress over insomnia or if you're staying awake a little longer than usual - I now stay awake later, but fall asleep easily once I start to get sleepy. I thought worrying over insomnia at first would increase the likelihood of me getting it, but I still didn't :) Only on 0.5mg though, which is lower than usual.
Thank you for your prompt & kind replies.
 

purrsian

Senior Member
Messages
344
Thank you for your prompt & kind replies.
No worries, hope you have a good experience with it! I find I feel any differences from changing or missing doses the night after taking it, so you shouldn't have an issue tonight at all - tomorrow night is when you might notice any changes. Hopefully not though :D
 

purrsian

Senior Member
Messages
344
Insomnia and flu like feelings. I stopped getting these though when I hit 3 mg.
Thanks, my symptoms are always coming and going so I'm never sure if something is related to medication or if it's just my CFS changing up again. I've had a little flu like feelings, but that's been a part of my normal CFS symptoms lately so may not be the LDN. My mood and sleep have improved with the LDN even on such a low dose, which is wonderful :)
 

purrsian

Senior Member
Messages
344
Is this Dr prescribed? I see my Dr in a couple of weeks and might ask him this again.
Yes. It's actually a drug for alcohol/drug addiction, but has different actions at very low doses (normally 50mg for addiction, but 4.5mg for LDN use). My doctor wrote a prescription for me to take to a compounding chemist, as it isn't made in such low doses normally. It's a pretty cheap drug with low incidence of side effects, so that's why I thought it was worth trying. http://www.lowdosenaltrexone.org has lots of info on it, although it does look a bit of a dodgy cheap website lol

It hasn't had clinical trials for ME/CFS yet, so it's use for our condition is off-label. But there have been trials that show it's efficacy for fibromyalgia and I think MS and chrohns (but not sure). Best to start off at lower doses and increase up to 4.5mg to reduce likelihood of side effects, as we tend to be prone to sensitivities to things. I've started at .5mg and increased to 1mg after 1.5 months, as I'm super sensitive, but lots of people seem to start at 1 or 1.5mg.
 

Sushi

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Is this Dr prescribed? I see my Dr in a couple of weeks and might ask him this again.
Yes, it is prescription though some do order from India. If you ask for a prescription, I'd suggest asking for the 50 mg generic tablets that you can get at any pharmacy. You simply dissolve one in 50 ml of distilled water, use an oral syringe and keep it in the fridge--1 ml = 1 mg. Insurance usually covers most of it whereas from a compounding pharmacy it is fairly expensive and you have to keep getting it compounded at different doses.
 

Strawberry

Senior Member
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Seattle, WA USA
Thank you @purrsian and @Sushi . Great information and hopefully my doctor will let me try it! I may just go for the 50 mg tablets so that I can control my dose on a day by day basis until I find the right level. Then get it compounded.

It sounds like people have issues with flu and insomnia when going up by .5, can that be reduced by going up by .25?
 

purrsian

Senior Member
Messages
344
Thank you @purrsian and @Sushi . Great information and hopefully my doctor will let me try it! I may just go for the 50 mg tablets so that I can control my dose on a day by day basis until I find the right level. Then get it compounded.

It sounds like people have issues with flu and insomnia when going up by .5, can that be reduced by going up by .25?
Not sure sorry Strawberry, I haven't had an issue going up to 1mg from .5mg, but maybe that's because it's still so low. I think getting cold/flu is actually a good thing, as it means your immune system is finally functioning better again and can deal with some of the bad stuff, since the whole point of LDN is to try and re-regulate the immune system. So I won't mind if I get some cold/flu type stuff - the only times I've had any while having CFS have been when my CFS has been most improved, so I think it's a sign I'm doing better. It would be nice if my immune system could quietly work away on improving without actually affecting me though lol
 

Sushi

Moderation Resource Albuquerque
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It sounds like people have issues with flu and insomnia when going up by .5, can that be reduced by going up by .25?
That could be. Might be worth trying. Even though I have been on the same dose for years I don't get it compounded cause it is SO much cheaper to dissolve the tablets and have the benefit of insurance.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
After using it for 10 days at 1.5mg/day, I haven't noticed any benefit, but it's hard to ascribe it necessarily to Naltrexone.
I have been a fair bit more tired while on it, if anything.
So I am going to stop & see what happens. If I'm still tired, I am going to start again at 4.5mg. F*** it.
 
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