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Experience with LDN? low dose naltrexone
- Thread starter Jonathan Edwards
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It might be difficult to try at different dosages as you can’t just start at a higher dose - you do have to start small and work up. I had side effects every time I increased my dose - terrible nerve pain all over my body at night and horrendous dreams. You are supposed to stay at each new dose for two or three weeks before increasing again. Then at some point you go past your limit and have to come back down until you find the right dose.
ultimately it has been worthwhile and I have had a reduction of normal pain levels and better cognition.
it is such a cheap drug that I would say it is worth investigating as according to anecdotes on the Facebook group there are rarely any long term side effects that stop people from using it.
I do find that I have to skip a day occasionally as well otherwise it does seem to stop working. There are documents that have been put together on the Facebook group that describe why this is. I can get them and post here if anyone wants them.
Jonathan Edwards
Senior Member (Voting Rights)
It would be useful to know if there is any knowledge about mechanisms and schedules.
If the dose has to be increased slowly because of side effects then I think blinding becomes pretty well impossible. If so I think the only option is to do a fix schedule study to see if benefit can be shown statistically at lower dosages and then, knowing that there is some useful effect, to do an open titrating study with as strictly objective an outcome measure as possible. If the benefit is just a shift in symptoms that is going to be tricky.
There are numerous resources on the page but a lot are posted and not documents. I can go through tomorrow on the pc and copy them into documents and send them to you. Or if you want to join the group is called:
Kitty
Senior Member (Voting Rights)
My reason for not trying it was that I typically take a dose of tramadol for nighttime pain at least twice a week, which works well and doesn't have any side effects. It makes a big difference to my QoL, so I decided that swopping it for something which might or might not be effective against nighttime pain and seemed more likely to come with side effects, wasn't ideal. (Opiate-related meds apparently aren't compatible with LDN.)
I'm not severely affected, though, and I'm lucky enough to have the mobility equipment I need to be able to get out of the house some of the time; this affects the risk/benefit calculation too.
I'm not severely affected, though, and I'm lucky enough to have the mobility equipment I need to be able to get out of the house some of the time; this affects the risk/benefit calculation too.
Jonathan Edwards
Senior Member (Voting Rights)
Or if you want to join the group is called:
I don't have an account for Facebook and am glad I don't. Sometimes it limits things but for various reasons I think it best for me not to join!
Maybe for the same reason it is such a blessing that I never joined Twitter - for everyone.
We are particularly lucky you have joined us here.
I've taken LDN a few times over the years, with doubtful results. Still, there are so many reporting improvements with it that a smart trial would, I think, be a good thing.
However, I cannot help but file it a bit with an arguably similar approach of treating Lyme with Plaquenil. Are we just throwing a symptom-squelching thing at ME/CFS? It surely is a good thing to mute symptoms, but what if it's at a cost like lowering immune reaction, that is, allowing an infectious pathogen not only to survive, but helping it flourish?
I don't know the mechanism by which LDN works, or if I did I've forgotten. These are just my personal reservations. But I'd want to know that mechanism beyond speculation.
However, I cannot help but file it a bit with an arguably similar approach of treating Lyme with Plaquenil. Are we just throwing a symptom-squelching thing at ME/CFS? It surely is a good thing to mute symptoms, but what if it's at a cost like lowering immune reaction, that is, allowing an infectious pathogen not only to survive, but helping it flourish?
I don't know the mechanism by which LDN works, or if I did I've forgotten. These are just my personal reservations. But I'd want to know that mechanism beyond speculation.
if you’re looking at drug repurposing for currently available approved drugs, better candidates would be low doses of the dopamine stabilizers/dopamine partial agonists.
Abiliify, Rexulti (Brexpiprazole), vraylar (cariprazine), and possibly Piribedil. These drugs are likely to help patients to a greater extent than LDN.
LDN is my second or third best ME treatment (cumin wins the trophy!). It was very effective in blocking my neuropathic pain: muscle aches strongest in my front thigh muscles. One day I trudged about 600 m before giving up that walk, due to the thigh aches. I took my first dose of LDN that day. Next day I went for the same walk, felt pain-free and continued walking. Up a steep hill, and still felt fine. I continued walking, because it was so pleasant to be able to do it pain-free again. I ended up walking several km up and down hills. It blocked the pain effectively for a year or two, then one time when I retested it (to make sure the dosage was optimal), I found that the pain was gone even without LDN. That lasted over 5 years, until the pain recently returned due to yet another new food intolerance. The LDN worked again, and after a week or two, the pain stopped returning again. So, LDN is great stuff for me.
I started with 4.5 mg, which worked. Sublingual allowed ~30% reduction in dosage. 2.0 mg had no effect, but 2.25 had full effect. It became less effective over 5 mg. Effects lasted somewhere between 36 and 48 hrs, so since I prefer minimizing drug intake, I alternated morning and evening doses appropriately.
LDN had no effect on any of my other ME symptoms. No effect on sleep or dreaming; ME already gives me vivid dreams and altered sleep patterns.
I started with 4.5 mg, which worked. Sublingual allowed ~30% reduction in dosage. 2.0 mg had no effect, but 2.25 had full effect. It became less effective over 5 mg. Effects lasted somewhere between 36 and 48 hrs, so since I prefer minimizing drug intake, I alternated morning and evening doses appropriately.
LDN had no effect on any of my other ME symptoms. No effect on sleep or dreaming; ME already gives me vivid dreams and altered sleep patterns.
Jonathan Edwards
Senior Member (Voting Rights)
Any particular reason to think that?
Arisoned
Established Member (Voting Rights)
Just so you are aware, and anyone else reading this - you can take Very Low Dose Naltrexone with opioids, with a view to transitioning on to Low Dose Naltrexone (without opioids). VLDN also replenishes opioid receptors (builds new ones) that may have been exhausted by opioid use.
Arisoned
Established Member (Voting Rights)
Yes, unfortunately facebook has stopped allowing some documents to be edited and any more to be created so we can’t update them any longer so we just post info in discussions. I think people tend to read them there more anyway. I don’t know that people read documents all that much with low energy.
I only know two people with ME who have tried LDN. ( Perhaps because it worked for them - if it dosn't people may be less inclined to share experience)
For one teenager dosing took around 12 months to hit a sweet spot ,and whilst still severely affected , sleep quality ( not quantity) and GI motility has improved and concentration improved such that an online art course is now possible.
I think people find it difficult to contemplate how much even a small difference means when you are severely affected, and it would be great if this group could somehow participate in a trial.
For another it has been life-changing . From bedbound to being able to undertake some professional work. This person is very keen to have it trialed and has tried to achieve this for years .
For one teenager dosing took around 12 months to hit a sweet spot ,and whilst still severely affected , sleep quality ( not quantity) and GI motility has improved and concentration improved such that an online art course is now possible.
I think people find it difficult to contemplate how much even a small difference means when you are severely affected, and it would be great if this group could somehow participate in a trial.
For another it has been life-changing . From bedbound to being able to undertake some professional work. This person is very keen to have it trialed and has tried to achieve this for years .
cassava7
Senior Member (Voting Rights)
I started at 0.5 mg but it gave me insomnia, even when I took it at the beginning of the afternoon (when I wake up). Anecdotally, insomnia is supposed to dissipate after a few days of treatment but since I am bedridden with severe ME, I cannot afford any further deterioration from a lack of rest so I stopped.
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Mister Person
Established Member (Voting Rights)
I don't have ME. I have chronic widespread pain, but I have PEM(that's why I'm here lol) , that is the progressive worsening of my pain with minimal effort among other symptoms. Another Wierd thing about me is my pain is mainly non gi abdominal pain, and while I do get fatigue it comes and goes. LDN worked for me! It did what it was supposed to do, but it didn't change my life because it didn't stop me from PEM and it made managing PEM harder because my PEM is ever ongoing, there is no such thing as being stable for me. I was in a rush to find out if it would work for me, so I took 2x0.5,2x1.0, and then at 1.5 I could pretty much feel it coursing through me you could say. PEJE(Professor Emiritus Jonathan Edwards), I'm wondering, do you think fibromyalgia patients who experience pem might be related to me in anyway? Are there any conditions out there that can cause exertion problems in the same way as ME?
I believe there must be some link between my PEM and ME PEM, but I can't say for sure that it's the same. Bc pain is pain... And fatigue is fatigue...
There are some odd clues about me. Does anybody else have a large short spike in symptoms when they land from jumping? Or when they get a fright/surprise?
I believe there must be some link between my PEM and ME PEM, but I can't say for sure that it's the same. Bc pain is pain... And fatigue is fatigue...
There are some odd clues about me. Does anybody else have a large short spike in symptoms when they land from jumping? Or when they get a fright/surprise?
Helene
Senior Member (Voting Rights)
This was also my initial reaction although I was thinking specifically about low dose Abilify as I am not familiar with the other drugs listed above.
My reason is both from family members, who have ME, experiences with LDN and low dose Abilify and also from anecdotal reports online from people with ME.
On family member's LDN experiences - I took LDN for over a year (started at 1.5mg and went up to 4.5mg) and initially saw a decrease in minor aches and pains but didn't notice other improvements or a change when I stopped taking it. Two other recently diagnosed family members who took LDN for about a year observed a possible improvement in mood but no other effects. Another two family members tried LDN for several months but didn't notice positive effects.
On family member's low dose Abilify experiences - Three of the above have observed large gains in physical capacity while taking Abilify. The two recently diagnosed family members went from not being able to walk a block to living normal lives including exercising. Certainly some of this improvement may been natural but the timing of the increases in dose and the improvements seemed to correlate strongly. The third person is now close to being able to live a normal life too and has seen large gains in both mental and physical ability. All three have taken Abilify for over a year and continue to take it. Another family member and I tried low dose Abilify but had problems with tolerance (caused insomnia) so stopped taking it.
Anecdotal reports online from people with ME - From following ME groups online I have observed that a significant number of people who try low dose Abilify note improvement. I haven't observed this to the same extent for LDN. Totally subjective, of course.
Edited for clarity.
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How does the person know that the improvement isn't a fluctuation in illness caused by something else?
I got as far as buying some naltrexone with the intention of making up some solutions, but by the time I had read around the evidence, I lost interest. I haven't seen anything sufficiently convincing. The balance of anecdotal reports seemed to be very much on the negative/no effect side. I do think that good trials would be useful as it is so widely promoted, including by doctors who specialise in treating ME.
Perhaps the suggested 'no one size fits all' dosage problem could be largely overcome by having a baseline assessment for a month (e.g. including actimetry and daily pain scores), then a 3 month period when the dosage is adjusted to get to what the person thinks is the best dose in that time, and then three months at the 'individual best dose' with a treatment assessment in the last month. I'm not sure that the side effects are so predictable that they would break the blinding.
Do people who have tried LDN think that a trial like that would work? Obviously longer baseline, titration and stable dose treatment periods would be better if possible.
If given the choice of a trial of only LDN or Abilify, I think I'd vote for Abilify, because I think the potential side effects from Abilify are worse, and so it is more important to know if there is really an off-setting benefit.
At the risk of going off-topic, my PEM and that of many others here involves pain. I describe my pain when in PEM as like being crushed. It might be like the 'bone-crushing pain' that you get when you have the flu. ME/CFS is more than just fatigue. Mister Person, you might like to check out some of the discussion threads on PEM and other symptoms in https://www.s4me.info/forums/symptoms-and-signs-discussions.197/ - you could ask your questions there.
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Mister Person
Established Member (Voting Rights)
You and I may be in the same boat then eh... I don't know what my pain is, its not achey, and it jumps around. It's not quite what I imagine nerve pain to be, but it's certainly not physical pain. I've never experienced anything like it. Ain't nociplastic either.
Now about Risperdel, you're sure it wasn't placebo. The implication that the pain is mental lol