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LDN - how's it working for you?

Discussion in 'General Treatment' started by jace, May 26, 2010.

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I've been on LDN for...

  1. Less than a month - it seems good

    12.3%
  2. Less than a month - it's not nice

    14.2%
  3. 1 - 3 months - feeling much better

    6.2%
  4. 1 - 3 months - some good, some bad

    6.8%
  5. 1 - 3 months - feeling worse but hanging in there

    3.1%
  6. 3 - 12 months - it's great

    9.9%
  7. 3 - 12 months - not sure it's working for me

    9.3%
  8. 1 year and more - this stuff works for me

    13.6%
  9. 1 year and more - not sure it's worth it

    3.1%
  10. I used to take it but I gave up

    21.6%
  1. debored13

    debored13 Senior Member

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    I have started on LDN for a CFS diagnosis.

    I figured Naltrexone has such few side effects even at higher doses, it would be unlikely if it had side effects at doses far lower. However, after a little reading up on the (admittedly scant) literature on LDN, and some odd effects, I'm a little less sure about its safety. I figured I'd ask here.

    I have tried LDN and stopped a couple of times. Each time, I'd get initial benefit (mental energy mostly) with almost no side effects--no insomnia, anything, and then after a few days to a week it would gradually start to have more intolerable side effects. I initially felt overall more happiness/pleasure/mental energy and even sort of "high", but in a subtle way. Then each day after, these feelings would get more intense until it was distracting, not pleasurable or helpful anymore, and seemed even dangerous, as if the drug was building up in my system. I had insomnia, tension, and extreme mania (I have had no diagnoses that correspond with mania and have not experienced mania from, for example, stimulant medications).

    I'm torn. On one hand, this is a really shitty disease and if it showed any benefit I want to see if it can be used, maybe at a smaller dose? On the other hand we don't even know if Low Dose Naltrexone is safe, and it seems quite possible that it has qualitatively different effects at a low dose. This paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ notes those effects, and in way of context, discusses the fact that morphine, at doses 1/10 of analgesic doses, produces hyperalgesia. The main hypothesis in this paper is that naltrexone modulates microglia and has effects on TLR4, which explains its anti-inflammatory and immunomodulatory effects. However, they note that another possible explanation is that partial blockade of the mu-opioid receptor leads to compensatory upregulation, making people more sensitive to their endorphins. Dextro-naltrexone was proposed for more study because of not having any affinity for opioid receptors, yet having the same anti-inflammatory effects as naltrexone.

    My guess is that I am experiencing the effects of upregulation of opioid receptors, with some downstream effects on dopamine, that could explain the mania and "high".

    What is tougher for me to understand is why the effects seem cumulative and whether we could come up with a workable dosing schedule based on that. Could the cumulative effects simply be explained by a gradual upregulation of opioid receptors? Or would they be explained by the longer half-life (12-18 hours) of naltrexone's main metabolite? Or to the fact that smaller amounts can continue to be absorbed in the gut for up to days afterwards?

    Sorry, this is a little rambling, but my main questions are: a) Why is this phenomenon happening? b) is there a physical danger? e.g. mania is obviously a scary effect, but is there an actual direct physiological danger to low dose naltrexone that's separate from normal doses of naltrexone, and c) Would it be possible/advisable to try a different dose or different dosing schedule for this patient?

    If dextro-naltrexone was available, I would absolutely take that in a heartbeat. However, I don't think that will be available for a long time, unfortunatley.
     
  2. debored13

    debored13 Senior Member

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    I would love to hear about this from someone who has experienced something similar, or is good with pharmacology. Naltrexone is an interesting drug and it is the only thing that has helped me. Yet it has some intense side effects. If i could a) find the right dosing schedule or b) just stick to it as an occasional mood booster, I would be happy to use it.

    I also think naltrexone at the right dose would be a great add to opioid or kratom use. Remember that I said at the right dose. At too high of a dose it would cause precipitated withdrawals when added to the mix. There is a difference, dose-wise, betweeen Ultra Low Dose Naltrexone and Low Dose Naltrexone. The latter (generally doses above 1mg, would almost certainly cause precipitated withdrawals if taken when a patient was already on opioids. However, if you wean totally off opioids/kratom first, and then add the Low Dose Naltrexone before the opioid, it does not cause precipitated withdrawals. However, if you can't wean off for some reason, Ultra Low Dose naltrexone is your best bet, as it can be taken in that dose range with no risk of precipitated withdrawals--in fact they are working on a pill (called oxytrex) that has ULDN alongside oxycodone.
     
  3. debored13

    debored13 Senior Member

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    Nobody totally understands mechanism of action, but there is at least one good paper that speculates on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
    There's probably two competing theories--compensatory upregulation of opioid receptors due to partial blockade, or the effects on microglia/TLR4 receptors that they speculate as responsible for anti-inflammatory effects. It's quite possible it does both. If we could get Dextro-naltrexone, that would be great as we could see if the anti-inflammatory effects work separate from the opioid effects.
     
    pattismith likes this.
  4. Thinktank

    Thinktank Senior Member

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    My girlfriend just started on 1mg/day LDN as a complimentary treatment for lupus (she does not have ME/cfs).

    She takes it around 10pm, her sleep has drastically improved with way less wakenings and less bathroom trips. (great for me too because i'm a light sleeper so i usually wake up whenever she gets up.)
    The problem however is that she feels more sleepy the following day. Is that a side effect that will disappear after x period of time or is it to stay?
    Would it be better to lower the dose, some have mentioned that extra sleepiness is a sign for them that the dose is too high.
     
    sb4 likes this.
  5. perchance dreamer

    perchance dreamer Senior Member

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    @Thinktank, I didn't have daytime sleepiness when I first started LDN, but I did have a feeling of surrealism during the day, as if I were in a waking dream. That has gotten better for me, as well as the other side effects I had when I first started.
     
  6. debored13

    debored13 Senior Member

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    I am on my fifth day of starting ldn again. I was getting great results but the insomnia is way, way, way too much to handle. I'm not sure it's because of the LDN but i gotta cut the LDN out to be sure.
     
  7. Thinktank

    Thinktank Senior Member

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    I think that's a better explenation yes of what's going on, i will tell her it will get better. Thanks.
     
  8. Thinktank

    Thinktank Senior Member

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    How much mg are you taking? STrange how LDN affects us all differently.
     
  9. debored13

    debored13 Senior Member

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    1.5 mg in the morning, then stepped down to .5 mg
     
  10. frederic83

    frederic83 Senior Member

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    LDN caused me constipation at 3 mg. And insomnia above 1.5 mg. At 0.5 mg, it can be useful for depression or anxiety, for me. Did not work for the fatigue.
     
    debored13 likes this.
  11. debored13

    debored13 Senior Member

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    it definitely helped me with mood but it fucked up my sleep hard
     
    EsetIsadore likes this.
  12. Thinktank

    Thinktank Senior Member

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    A little update on my girlfriends LDN-trial.
    She's been on 1mg LDN for a week now and doing well. Her sleep has significantly improved with way less wakenings and no more nighttime urination. That's a big win because she's been dealing with that ever since she came down with lupus. She also gets less episodes where she feels dizzy and needs to rest, in fact she went on a very busy trip with her friends yesterday and did not get sick at all. She feels a bit fatigued today but nothing crazy.
    I also notice her skin improving, less dryness because of Sjogrens. Hopefuly with the addition of LDN she can finally taper off the remaining 2.5mg prednisolone and not having to add some harsh immunosuppresing med like azathioprine that her rheumy has been pushing lately.
    I bet that her rheumy will give a speech on the next appointment for using LDN and it not being a conventional medicine, i doubt the rheumy even knows what LDN is. Man, i hate that close minded asswipe.

    Bloodwork will be done in 2 weeks or so, i really want to know if this short period on LDN has possibly increased her complement and WBC levels, and hopefully lowered some antibodies and ANA titer.
     
    Last edited: Nov 26, 2017
  13. Thinktank

    Thinktank Senior Member

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    Something great has happened with the use of LDN, maybe i should create a seperate thread if anyone is interested.
    Her labwork came back. WBC have gone up to 5000+, a healthy level. Her ANA-titer has dropped from 1:1280 to 1:320!! Her C4 is now within normal range and C3 has gone up too, still a bit low but it's getting there.
    All of this happened after just 3 weeks on 1mg LDN. I think that's amazing. :balloons:

    I was so worried she'd have to go on stronger and potentially dangerous medication like belimumab, methotrexate, azathioprine etc. But if the current improvement progresses she will get into remission from lupus on only hydroxychloroquine (been using that for 2 years) and LDN.
     
    Helen and sb4 like this.
  14. hamsterman

    hamsterman Senior Member

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    That is extraordinary. LDN has been good for me with Cronh's disease as well. I think its starting to gain a bit of acceptance in auto-immune diseases circles..
     
  15. Thinktank

    Thinktank Senior Member

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    I have Crohn's disease too! I tried LDN 3mg a few years ago but i didn't tolerate it well, i felt a bit overstimulated and it increased my allergies. I want to try it again, this time at a much lower dose of 0,5mg.

    What improvements have you noticed from the use of LDN?
     
  16. hamsterman

    hamsterman Senior Member

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    Wow, I wonder if you are related to me... I have Cronh's, Lupus, and ME in my family as well. You wouldnt happend to be Ashkenazi?

    Yes, .5mg is a much better dose to start at. Its a very tricky medication....because it often requires an initial adjustment of the body... a time where you have to get used to it. But I've found that right dose is around 2mg... but It varies quite a bit from person to person.

    As far as my Cronh's, I am in a small minority in that caught it early, and have been able to keep it manageable. But I've noticed that since I started LDN.... I almost never have any pain any more, other than the emergency bathroom trips, but that's no biggie. But I actually didnt stay on LDN because of the Cronhs... I stuck with it, because I noticed an immediate improvement in my brain fog. But I am still constantly tweaking the time of day/dose... because it often loses its strength. But I've noticed, if I try a larger dose, around 5 mgs... it never does anything.
     
  17. confetti11

    confetti11 Senior Member

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    So...I started taking LDN again. I've taken it in the past (2007) and worked my way up to 4.5mg rather quickly as I remember. I think I only stopped taking it due to finances.

    I don't remember having that much trouble with this the first time. So this time, 10 years later, I started with 2.25mg for a few days then went to 4.5mg. 2.25 seemed okay, but when I went to 4.5, I had a headache immediately and was really uneasy, restless and felt generally ill. I figured out quickly that's what was new in my routine, so I stopped it.

    With my good history with this medication, I confidently restarted again the other day with 1.5mg. But, I did that for a few days, and I feel like it's just making me feel generally ill. Heaviness in my stomach, insomnia, lessened appetite, I think more frequent urination and just general sickness and malaise.

    My doctor originally restarted me on this to calm my immune system down. It was riled up from something else I took (it's activated, not suppressed according to blood tests) and I was feeling achy. He thought the LDN would help regulate my immune system and lower inflammation thus, lower these symptoms.

    But now it seems LDN may be actually causing more malaise and sickness. Does LDN do this as described? Does anyone know?
     
  18. JES

    JES Senior Member

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    Yeah, in my experience and from what I have read this is not uncommon. I did not have much malaise, but I had stomach discomfort and slight diarrhea for two weeks since starting on 1.5 mg. After that stomach symptoms went away and never came back until I attempted to increase the dosage. Also the immune reaction I would say is normal. LDN acts as an immune modulator, its action is very different from immune suppressants and hence may cause start up symptoms. I'm not a doctor, but a CFS doctor I visited told that having an initial strong response to LDN seems to predict better results long term than for those who never felt start up symptoms.
     
  19. JeanneD

    JeanneD

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    Clarification in advance: I'm well aware that as with any medication, many of us simply cannot tolerate LDN. I'm not questioning that in any way here. I know very well that intolerance is not just a question of changing how you take the medication. :)

    I'm simply curious how quickly those who are having intolerable rxns to LDN titrated up? My specialist put me on a very slow increase -- up to 4.5mg over 6 weeks. I know other patients who have titrated up over 2 or 3 times as long. The reason I was given is that PWME adjust very slowly to LDN and moving too fast can give difficult side effects.

    In the beginning I found I needed to take it at night to ease the not-overly-difficult adjustment symptoms. Once I got past about 1.5 mg (2-3 weeks) I had no more side effects.

    Now several years later my doctor is doubling the dose, split morning and evening. Again, I am titrating up very slowly. The first dose or two (0.1 and 0.2mg) made me feel flu-like, but since then I've had no side effects.

    The biggest, and very welcome, effect of LDN for me is greatly improved cognitive function.
     
  20. confetti11

    confetti11 Senior Member

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    Thanks @JES and @JeanneD

    I guess I'm most mystified that this is causing me such problems now when 10 years ago, it appeared to not cause any. I guess in 10 years, things certainly can change. Most markedly that I've gone into menopause since then. And I'm just generally older!

    It gave me (I think it was the LDN) more than just a flu-like feeling. It gave me a very dark emotional sensation along with the physical heaviness. I've got start and go up very slow and start when I don't have so much work stuff ahead of me.

    @JES, it is encouraging that a strong response might mean this medication can do something for me...when I can start taking it again.

    Thanks you.
     

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