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Medscape: Low-dose Naltrexone Explored as Option for Chronic Pain (by Miriam Tucker)

Discussion in 'General ME/CFS News' started by Kalliope, Mar 17, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Miriam Tucker's third article from the recent 2- day summit at the Bateman-Horne Center
    Low-dose Naltrexone Explored as Option for Chronic Pain

    Naltrexone is an opiate antagonist currently available in a daily 50-mg tablet dose for the treatment of alcohol and opioid dependence. But in addition to opioid receptor antagonism, the drug also appears to exert anti-inflammatory effects via a separate mechanism targeting microglial cells.

    ...

    There is currently no drug approved by the US Food and Drug Administration for ME/CFS, and treatment of the condition focuses on relief of symptoms including widespread pain. Many patients with ME/CFS also meet clinical criteria for fibromyalgia, for which LDN has shown benefit in several of Younger's studies.
     
    Little Bluestem, Joh, MErmaid and 6 others like this.
  2. Frogger

    Frogger Senior Member (Voting Rights)

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    I was just about to post this too.

    LDN helps in different ways, like helping to keep your thyroid under control, and yes perhaps lowering your level of pain. For some PwME their immune systems are under siege and LDN has in some cases improved their condition. Doctors think this is perhaps due to the immune modulating properties of LDN. In any case, if you still haven't tried it give it a go because if LDN works for me, it might work for you too.

    I think more research is in order to help expand the number of FDA approved uses.
     
    dangermouse likes this.
  3. Trish

    Trish Moderator Staff Member

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    As it says in the article, LDN hasn't yet been researched in a clinical trial for ME/CFS, but it does sound promising to help with symptoms. I hope Jarred Younger can get funding for his planned trial.
     
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    It seems quite a few ME-patients in Norway have tried this after a news-story a few years back about an MS-patient who experienced a lot of symptoms got reversed with LDN. She was able to start working again. That led to more awareness about the drug among doctors and some have been willing to prescribe it off-label to ME-patients. My impression is that quite a few feel it helps them, but I have also heard stories of deterioration due to LDN. I don't know if the amount taken has been the same among those who have tried it.
     
  5. Helen

    Helen Senior Member (Voting Rights)

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  6. alicec

    alicec Senior Member (Voting Rights)

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    I find LDN very helpful for dampening an overactive sympathetic nervous system and stabilising blood pressure.

    I recall others reporting beneficial autonomic effects (probably on PR).

    Whether this is mediated by the action of naltrexone on TLR4, which is thought to be the reason for the microglia effects, is unknown. Maybe naltrexone has other as yet undocumented effects on biological systems.
     
  7. Samuel

    Samuel Senior Member (Voting Rights)

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    I tried low-dose naltrexone (LDN) for a month, but had
    several episodes of prolonged severe nausea, vomiting,
    delayed gastric emptying, sweating, diarrhea, and worse IBS.

    In one episode, I needed to vomit for something like 7 hours
    but could not. Strange regurgitating, but no vomit. When
    finally vomited, was a large amount.

    I consider this to be the first time I had gastroparesis.
    In 2016 (a few years later) I was diagnosed with
    gastroparesis (please see [Gastroparesis]). It continues.
    Thus, LDN might have caused gastroparesis.

    ===

    I had moderate nausea the rest of the time.

    Those symptoms went away when I stopped the LDN.

    Recovery from the physical stress of having to kneel
    etc. was lengthy (months or longer).

    ===

    I don't know what specifically caused the reactions.

    We had used a compounding pharmacy, and instructed them to
    use pure LDN plus acidophilus filler in small capsules,
    immediate release, but found out later that they used
    crushed tablets.

    Were the reactions likely caused by filler? Or by LDN?

    ===

    I was taking guaifenesin for at least part of the time, but
    it has never caused any problems. Of course I wasn't taking
    anything that contained opiates.

    The LDN was at 0.5mg and 1.25mg on alternate days.

    On the 1.25mg days I took Benadryl to try to help prevent
    some of the nausea and for sleep and allergies.
     
  8. MErmaid

    MErmaid Guest

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    I tried LDN, and it had some mild positive effects. But then I graduated to drugs that were better suited and targeted to my individual needs. I feel LDN is worth a try, if one has no other options.
     
  9. Milo

    Milo Senior Member (Voting Rights)

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    Indeed we are in desperate need for clinical trials to find out effectiveness, adverse events and how it stands up against a placebo in our patient population.
     
  10. MErmaid

    MErmaid Guest

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    That’s a challenging task to figure out exactly who in our patient population would benefit from LDN, who would not benefit, and who it would harm.

    Sort of like, what comes first, the chicken or the egg (subtype vs DBPC)
     
  11. MErmaid

    MErmaid Guest

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    I agree that depending on the individual, it’s plausible that different benefits may be gained (pain reduction, HR/BP stability, etc.), but currently I am unclear how any thyroid benefits would be gained.
     
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  12. MErmaid

    MErmaid Guest

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    In the past, I also used a compounding pharmacy and requested vegetarian capsules and a specified filler. I sat and waited for my meds. The owner knew a few things about LDN, which pleasantly surprised me.
     
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  13. Frogger

    Frogger Senior Member (Voting Rights)

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    The immune modulation properties of LDN could help people with immune related thyroid issues.
     
    Last edited: Mar 18, 2018
    Little Bluestem and dangermouse like this.
  14. Frogger

    Frogger Senior Member (Voting Rights)

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    I am sorry you had such bad experiences with LDN. I have seen other people talk about experiencing adverse side-effects. For some it is a reaction to the fillers, for others they just can't tolerate it.
     
  15. Milo

    Milo Senior Member (Voting Rights)

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    Not sure what DBPc stands for.

    But a good trial would have enough patients that would be subgrouped (ex: gut issues, MCAs issues, muscles issues, severity level) and compared. In the best of worlds, brain imaging before and after could be compared. Did I mention we need biomarkers?
     
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  16. MErmaid

    MErmaid Guest

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    Double-Blind, Placebo-Control

    Why stop there? Since we are dreaming, maybe we could employ the NIH, because they seem to own the coolest high-tech equipment and tools to measure all kinds of things.
     
  17. Helen

    Helen Senior Member (Voting Rights)

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    One of my doc´s who prescribed LDN told that it is genetic if it works well or not, so I guess carefully trying LDN from a low dose (0.5 mg) and very slowly increase is the only way to find out if it´s good for you or not. To minimize the risk for insomnia it should be taken in the morning.
     
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  18. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I use the transdermal form of LDN and experience no digestive side effects.
     
  19. Dancer

    Dancer Established Member (Voting Rights)

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    Me too. I kept trying LDN in pill form, and after several days, would consistently get sharp stomach pain and GI probs. My doc prescribed a cream (comes in a syringe for dosing) that I use at night. It has helped with sleep and pain...and who knows what else. :) No more side effects.
     
  20. dangermouse

    dangermouse Senior Member (Voting Rights)

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    I tried LDN a few years ago, I had very bad reaction to it and couldn’t tolerate it.
     
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