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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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
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.
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.
What were the difficult symptoms you experienced at each bump?
So naltrexone doesn't induce insomnia?
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.
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.
Only on 0.5mg though, which is lower than usual.Thank you for your prompt & kind replies.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
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
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
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
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.
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
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.