Experience with LDN?

The UK government working party on research strategy for ME has been discussing the value of setting up trials for drug repurposing. LDN is a contender. I would be interested in the range of experience - positive or negative - amongst members.

 

None but haven't ruled it out yet, there is a very busy Facebook group about it with a lot of members with MECFS, fibro, and other conditions with poor quality of life and poor medical support.

 

Seems like anecdotally it helps only people with body or joint pain. So they would have to make sure a trial focuses on that subcategory of patients.

 

For me LDN has correlated with a slight improvement of cognitive issues. No revolution, I am not able to read long texts or to write much and I can still get completely confused quite often and memory is still awful.

But after taking LDN I have been able to take some online classes. The courses are short and it's possible to take them even if you can only concentrate for a few minutes at a time.

Perhaps the sleep is deeper as well.

I thought this article in Medscape from Miriam Tucker on LDN and ME was good, and brought it to my GP when we discussed trying it:

Low-Dose Naltrexone: An Inexpensive Medicine for Many Ills?
https://www.medscape.com/viewarticle/926611

ETA: I have less of a burning/pressure sensation in the head after having started up with LDN, if that makes any sense.

 

I took it briefly but had no real change (except vivid dreams). It may not have been long enough. I can't remember now why I chose to stop.

I tweeted recently about what I consider undue hype around LDN. While it may seem harsh — and there are people in the Facebook group I mention who have found benefit — it is roughly my position on LDN:
https://twitter.com/user/status/1605618114045026305

 

Also, what's the latest with Jared Younger's LDN for ME trial?

 

I would add "Temporary improvement" to the list above. I took LDN first at very low dose (.5 mg), I felt nothing, then over three months I increased to 1.5 and began feeling improvement, including less crashes and I was quite happy about that, the only side effects were those vivid dreams (which I actually enjoyed), but then the vivid dreams turned into sleep disruptions in the form of waking up 1-2 hours earlier every single day no matter what I tried, so I had to give up, reluctantly.

 

Interesting about the vivid dreams with LDN.
Vivid dreams can be a ME symptom.

I have vivid dreams after having foods I haven't eaten in while, as well as sometimes when I take probiotics.

 

I took LDN for 3 weeks and it made me feel agitated, it also disrupted my sleep. I discontinued.

I don't have pain. From what I've read from pt reviews over the years is that it appears to help with pain.

 

I took LDN for several months and witnessed absolutely no benefits. It was prescribed early in my illness nightmare, and I felt the propensity to assuage symptoms was overhyped. It was demoralizing when it yielded no benefits, but I know how that disenchantment was rooted in the unrealistic expectations created by my provider.

 

I tried LDN in 2019 for several months starting at a low dose of .5 mg, and increasing by .5mg a month. The maximum dose to be taken was 4.5mg but it was suggested that the ideal level would differ for each person so I might be best suited at a lower level.

All was well for 4-5 months up to about a dose of 2.5mg. I didn't notice any great difference apart from a couple of episodes of much greater clarity in thinking. My brain seemed back.

I would have continued to take it but I had some new symptoms ( rashes, diarrhoea, and then a full anaphylaxis after eating a satsuma) so stopped, intending to restart when back to normal. My new normal included a diagnosis of MCAS with odd reactions and throat swelling, severely worsened by the covid vaccines. The odd flares are continuing, the latest one to my toothpaste ( same brand for the last 10 years) so I haven't felt stable enough to start again although if things settle down, I will try again. I am curious about the clearer thinking even if it was only a couple of short episodes.

edit: I voted for 'useful improvement' on the basis of the short episodes, but I'm not sure that 'no change' wouldn't have been more accurate if the totality of the experience was considered.

 

I really hope that LDN is given the consideration is warrants. I have seen it help so many people, and yes it isn’t a straight forward med. It isn’t the same for everyone.

LDN doesn’t just help people in pain, it’s a shame that it is misunderstood like this. Often LDN helps people who don’t have pain, just have ME with no pain.

Dom is correct. Often people want to know if they are taking LDN correctly and how long it will take to work, and there isn’t an answer because everyone is individual and LDN needs plenty of patience unfortunately.

In the LDN group for PWME and Fibro when people ask this question often people will post that LDN has been “life changing” for them. That isn’t hype, we have some quotable quotes in the group. Others it can help a few symptoms such as improved sleep and mood. Other symptoms as an example from the poll we have are - less exhaustion, less PENE, PEM, able to do more, improvement in thyroid function, fertility, weightloss, cognitive function, restless legs, lowered liver enzymes, improved memory, helped PoTS symptoms, improved GI issues, less headaches, muscle cramps, allergies… today we learnt that someone doesn’t want to smoke anymore and another person has stopped binge eating. There are many many more symptoms LDN helps with.

I should add here that there are people that try all the available options on dosing, low, high, alternative day dosing, changing formulas, time of day dosing - they may exhaust everything and try LDN for a year and it just doesn’t work for them. It may be of note that Dr Chheda (according to Cort Johnson’s report in Health Rising) will still keep her patients on LDN if they do not have any positive responses “because of the positive research”.

Someone posted they went swimming the other day. First time in years. That is how it was for me.

There are some temporary side effects such as vivid dreams or sleep disruption, maybe low mood if your dose is too high. But these are not serious adverse side effects like some meds I have been given. Here are a couple of reviews -

Low-Dose Naltrexone (LDN)—Review of Therapeutic Utilization
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313374/

Serious adverse events reported in placebo randomised controlled trials of oral naltrexone: a systematic review and meta-analysis. -
https://link.springer.com/epdf/10.1...3XFpPfsDp8YawuEVwSoqshxzsIRjuxUWcCAROK5fk3vEE

Often people are started by their Doctors on doses that are too high to tolerate for them. 4.5mg used to be the target dose but even Jarred Younger says that the dose is different for everyone, but that message doesn’t seem to have filtered down.

The LDN Trust Side Effects Survey supports that PWME (also PoTS, MCAS and Fibro) can be sensitive to excipients in particular we have found Microcrystalline, which is unfortunate as the main supplier of LDN in the UK supplies LDN with microcrystalline cellulose. The US has much better options and it would be great if the UK would catch up in that respect. I have tried but I was met with a wall.

We find that swapping to a better formula such as sublingual with just naltrexone pure powder (not crushed tablets) distilled water and glycerol, or diluting capsules or tablets to filter the excipients out helps a great deal with reactions to microcrystalline. I have had my own issues with it and removing it has been like night and day. It is in a lot of other meds, but when you have it in LDN you get a lot of it because your LDN dose is tiny.

LDN Trust Survey -
https://ldnresearchtrust.org/sites/default/files/LDN_Side_Effects_Results_Jan_2021_1.pdf

Starting at a low dose (0.5mg) and titrating very slowly (every two weeks) seems to have much better outcomes. Those of us who are incredibly sensitive to meds, or have MCAS can start lower on 0.1mg and often titrate slower.

Other fixes are changing the timing of your dose to morning, (no need to dose at night the rebound happens whenever you dose per LDN Now) http://ldnnow.com/48501/90412.html or even later in the day rather than evening to deal with sleep disruption.

Another fix is that if LDN appears to stop working - to skip a day, that the issue could be too much too frequently and a day free can “reset” and get LDN working optimally. This has just really worked for someone. I need their permission to share first but we can see how it has helped visibly and it’s remarkable.

LDN is a drug that requires some patience and it can take months to work for some. Others it can work for after the first dose and I don’t believe this is placebo in the main as it continues working, as those same people continually post in the group that LDN is working for them down the line. There are odd instances where it appears to work for a couple of weeks then stop working. I agree that may be questionable if that is placebo.

I had great improvements with LDN. It completely overhauled my immunity. I don’t pick up several colds and viruses a year as I did prior to LDN, particularly my annual christmas cold. I had more energy, better sleep both getting to sleep and staying asleep. It helped with neuropathic pain, the feeling of flu with sore throats and my glands continually up - that went, and the poisoned feeling has never returned. My stamina started to improve and I had less payback. It took four months before I saw any benefits so yes, it takes time. It was a year before I fully saw improvements.

After a tick bite and catching Lyme seven years ago my health nosedived. I have mast cell activation severely and my health has been pretty poor and I stupidly took a long break from LDN (and my entire supplement regime) which I regret now I know LDN helps with MCAS (I didn’t know I had MCAS). I don’t know that I would have got so poorly had I kept taking it.

I am happy to gather information from the LDN for ME and Fibro group if someone who is good at surveys were to help me put one together. I am very poor cognitively (something LDN has only helped me with marginally) and I would likely get in a pickle with if I were to attempt it myself. But I am happy to provide anything else with permission from the group if it supports actually getting research in this country and giving access to LDN to more people, but please can we have good fillers not microcrystalline cellulose if this is going to be on severe or very severe people!

I hope I have made the point that much can be done if you start LDN at 4.5mg and have difficulty with it. It may need tweaking and it isn’t black and white.

 

Do you mean the one from a few years ago? He didn’t get funding for it.

 

A practical question that comes up in the context of an LDN trial is dosing. Titrating the dose up to find a best dose is very difficult to combine with a randomised fully blinded controlled design.

The simplest option would be just to try four different dose levels. The next thing might be to move up through about three doses on a monthly basis but then you hit statistical problems I think, in that people will expect to get better later. Any dosing that produces side effects regularly would damage blinding. I don't know what has been done in the past in this sort of situation. It cannot be entirely new as a problem.

 

From reading patient experiences with getting access to LDN, one of the biggest mistake physician make that leads to failure is to start the med at too high of a dose. "Start low and go slow" is what's recommended. And starting at 2 mg may be too high for some. Instead, try 0.5 mg and work your way up,

 

for other threads on ldn click the 'ldn' tag at the top of this thread.

 

Could it be repackaged in a pharmaceutical shell, so that it's not obvious? I suppose that could cut across informed consent, though.

 

I considered trying it about about 8 years ago but I lurked on an LDN for ME facebook group for a year or so and noticed that very few people seemed to get a long-lasting improvement and the side effects seemed to be significant so I decided against it.

 

I tried LDN for several months many years ago. Started very low (0.25 mg) and increased super slowly.

I noticed no improvements. I voted "worsening of ME" because my circadian rhythm problems increased a lot, and I needed more and more sleep. By the time I chose to stop taking LDN, I was only able to stay awake for a couple of hours at a time and was sleeping almost round the clock.