Low-dose naltrexone (LDN) for ME/CFS

  • Community Moderator

    The good @Looch mentioned this in the thread on overarching approaches to managing ME/CFS, and I thought it'd be worth it having its own thread. There is growing science to support LDN as a treatment (but generally not cure) for ME/CFS (research done by the NCNED in Queensland comes to mind, but I think there is some other work as well).

    However, from what I've seen, it doesn't help everyone, and even those it does help often have some 'adjustment' to it. So, for example, people might gradually increase their dose (by .25 to 1mg) every couple of weeks, and might feel a bit rough after increasing their dose (and some people can feel very rough - sometimes when this has been the case they've reduced the increment at which they increased their dose).

    I'm on it myself, and the benefits I've had have mainly been improved cognitive performance at a given level of capacity, rather than improving baseline capacity. It's quite noticeable though, and very welcome. There was also a temporary reduction in pain for a while, but I find my body gets desensitized to any pain reduction medication I take all the time, and thus it was with this one as well. There may be a bit of an improvement in recovery from PEM as well, but testing this carefully isn't something that is easy or pleasant to do, so file that under "anecdotal and possible but not definite". The dose I'm on is 4mg a day.

    How have other people found LDN? Have people found any interesting studies or papers on it?

  • @Daffy_Dave Good idea starting a thread on this 🙂 Apart from the Griffith Uni study, the other ones I know of are a retrospective study in Finland with 218 patients titled "Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" (Polo et al., 2019, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2019.1692770) as well as a case study from the UK in the paper "Low-dose naltrexone as a treatment for chronic fatigue syndrome" (Bolton MJ, et al. BMJ Case Rep 2020;13:e232502. doi:10.1136/bcr-2019-232502). Both are very small though making it hard to make any strong conclusions about LDN quite yet.

    On a personal level I am also on LDN. I was lucky enough to have minimal side effects and seem to tolerate it quite well though it also seems to have minimal benefit for me. It does do something as I tried stopping it recently and think I started to feel worse so started again but the effects are definitely not ground shattering and if I had had side-effects I doubt it would have been worth it for me.

    Interested to hear what other peoples experiences have been.

  • Community Moderator

    @Katt and @Daffy_Dave thanks for sharing. I’ve been wondering about people’s experience with LDN since I saw the research article. So hard to weight up risk/benefits ratio of trying something new.

  • My experience was similar to Katt’s. I was on 4mg and then 6mg for a while, and while I think there may have been a little benefit it wasn’t enough of a difference to be worthwhile. I also had side effects when increasing and decreasing.

  • @Daffy_Dave Did try LDN for a while about five years ago. Found some cognitive improvement early on but that was about it, was expensive and the GP wasn't keen on me using it because of the way it worked.
    Have had some results with Plaquenil, Sertraline and Lyrica though.

  • @dejarik Can you tell me what side affects you had? I’m one week into taking LDN.

  • @Daffy_Dave I have tried LDN, I think I was on 9mg. I found improvement at first but it started to wane. My big breakthrough is spironolactone, I have had no pain since going on it.

  • @Looch In my diary I’ve got that I felt sick, had headaches, light sensitivity, stomach pain, restlessness and lower energy. I was taking another medication for some of it, though, so some may have been related to that; and it wasn’t my long term experience, just when increasing/decreasing. On another note, as a result of poor planning I went straight from 4mg to nothing; I felt terrible for about three weeks before starting to feel better.

  • @dejarik Thank you for checking that. I have just increased from 1.5mg to 3mg, 2 weeks on 3mg then up to 4.5mg. Felt better the first week but more tired this week, will give it a few months and see. As you said, there are so many other factors it is often difficult to tell. The Professor I saw said that 70% of his ME/CFS patients had improvement on it so we will see 🤞.

  • @sez I am really interested in spirinolactone and want to try it. In terms of LDN, it seems mainly to help with fibromyalgia? But maybe the research through Griffith Uni will find a way to use higher doses without causing too many side effects. It seems to act on the NK cells. Should we start a spironolactone thread?

  • @Daffy_Dave

    I found pretty much no benefit to taking LDN, tried it multiple times for up to five months at a time. That said I also didn’t find any particular negatives ! I think a little bit of disrupted sleep at the beginning.

  • I’ve been trying LDN for around six weeks now. I started with capsules from a compounding pharmacist that were 0.5mg, increased by 0.5mg every week to 1.5mg but the side effects at that point were horrid. Each bump up i have disturbed sleep patterns, nausea, migraines, just feeling “unwell” (more than usual lol). But the worst was the impact on my BP. I have hypertension that has only been under control for a few months, and so the massive spike in BP and HR (talking like 170/119 whilst lying still trying to sleep at night) was unsettling and unpleasant (most apparent at 1.5mg dose).

    Have been switched to liquid form of LDN which is supposed to make it simpler to increase dose by smaller increments, but it doesn’t actually help that much (it’s 5mg per 1mL, which means 0.1mL is a 0.5mg dose, 0.15mL is a 0.6mg dose, and 0.2mL is a 1mg dose), it added one step in between 0.5 and 1 but even that is iffy as the dosing syringe doesn’t have a marker for 0.15mL!

    Still struggling to get my BP back down to where it was as well as maintaining the 0.6mg dose of LDN. Going to give LDN three more months with more antihypertensive meds to see if it happens to have benefits that are worth it. Probably won’t find out til I stop, but then the BP effects will muddy the outcome anyway. Hmm.

    Sorry long blurb and no clue! ><

  • @blanketfort I have been on LDN for about 8 weeks. Started on 1.5 mg, increased 2 weeks later to 3mg, then 4.5mg, which I have been on for about 2 weeks now and is my max dose. Same side affects as you- nausea, sleep disturbance, the “off” feeling, some headaches. No issues with BP but I don’t have any history either.
    I haven’t noticed any significant improvement, I think my IBS may be slightly better, maybe the daily flare ups settle more quickly but I have also stopped working during this period so it’s hard to say if any improvement is from LDN or
    less “load “.
    Like you, I will persevere until I go back to the specialist in July. Good luck, I hope things settle down for you and you are able to feel some benefit, keep us posted 🤞

  • @Looch i'm relieved to hear the 'off' feeling isn't just me, I started wondering if I was just being a wuss, but it's definitely an adverse effect.
    It's so hard to just change the dose of LDN and keep all other variables of life steady, which means it always feels like a guessing game as to whether it's helping or not.
    I've dropped all the way down to 0.5mg (my starting point) again to try focus on getting BP under control before challenging it again. (sorry if i'm repeating myself, not got the hang of this forum format yet and i can never remember what the previous posts have said, I can't see them and write reply at the same time?).

    Since the beginning of the year I doubled the magnesium I'm taking and am more consistently taking PEA, so I'm not sure if they are to thank for less muscle spasms and pain, or if it's partly LDN reducing pain too. Will wait and see what happens when I stop LDN I guess.

  • @Royal-Flash I realise this is quite old, can you please expand a bit on what you mean by the dr not wanting you to be on it because of the way it works?

  • @blanketfort replying to myself? >< ah well i am too zonk to work out a better way. Just thought I should update my LDN travels. I ended up stopping LDN for two weeks and my BP didn't change. So have concluded that bp rise and LDN were just concurrent not causal. Sorry for the non helpful derail into bp!
    Have recently started back at 0.5mg, though these days I'm by myself almost all the time so I just don't know if I'm up for the nausea that comes with increasing dose (the v active doggo doesn't understand why i don't enjoy throwing up). I would just give up on LDN and maybe try again in a couple years, but I've already spent so much $ on it and it expires in September. I really wish there was a more precise way to increase to 0.6mg, 0.7mg etc rather than jumps. The little syringe thing the pharmacy gave me is so not precise especially when i have loss of fine motor control.

  • @coco if it was five years ago that was before more recent research (clinical trials etc) that have made LDN less left field and more acceptable to doctors who were reticent. (I was put off trying it for a while because I saw it recommended by groups who also promoted other things i knew were snakeoil. But more research convinced me to give it a go

  • @blanketfort replying to me again but just a final update on me and ldn:

    I think I’m gonna stop trying LDN. The potential benefit is feeling better than I actually am. Which itself has the cost of more risk of PEM crashes, less signals from my body that I’m doing too much. I don’t have confidence to define or enforce boundaries with myself let alone in the presence of others. I will pretend I’m not as sick as I am and will feel more of an imposter (doubt my own diagnosis) at the same time as potentially making myself sicker. Each up in dose makes me sick as a dog for a week, followed by a couple of good days, on which I do too much, followed by a week of crash and loss of ability to walk etc. The obvious thing would be to avoid that bit where I do too much, but seriously i'm mostly under house arrest with me/cfs, if i am able to walk with my dog to the corner of the block and back, i'm gonna do it! So even though it might work for me physiologically, i don't think it does pan out for me in real life. (plus too exy$)

  • @blanketfort Thanks for the update. It’s a risky business trying new meds/ supplements etc. Best wishes.

  • Community Moderator

    @blanketfort ditto on @Glimmer's response, really appreciate the update to help weigh up the pros and cons, such a lot of important factors to consider. Sorry you had to go through such serious highs and lows.

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