Low Dose Naltrexone: Well, of course, I... - Restless Legs Syn...

Restless Legs Syndrome
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Low Dose Naltrexone

Parminter
Parminter

Well, of course, I had to google it, to find out what on earth was going on here.

ldnscience.org/resources/in...

This leads you to just one of the many interviews on this strange cure-all.

This particular interview is of interest because it addresses ICDs, which may help those who are experiencing compulsive behaviours as a result of a dopamine agonist or levodopa.

It may also help with, inter alia, anxiety, depression, sleep and opioid abuse.

The 'suggested tags' also came up with peripheral neuropathy, which afflicts numbers of us.

A veritable salad of a drug.

Still, you must eat your greens, particularly in the form of cannabis and kratom.

32 Replies
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This is new to me. I just reviewed some of the members' experiences with LDN here, and I have to say this looks interesting. I will continue to look into this.

Just one caveat, however: since Naltrexone is explicitly an opiate antagonist, I've read that it is NOT a good idea to be taking it if you're also taking an opiate as a regular part of your drug regimen (i.e., daily). Naltrexone would block your opiate receptors, which could lead to sudden withdrawal symptoms. I imagine this is not a problem if you only use an opiate on occasion. And I also don't know if this is an issue with low-dose naltraxone. But just be a little cautious. Starting on a low dose of LDN, like 1.5 mg, might be the smart way to go.

The website is full of interesting things. The professionals involved are clearly excited by it, and the site is backed by a non-profit, which is reassuring in these rapacious times.

No caveats needed, it appears.

The low dose blocks the opioid receptor briefly, for a few hours, causing a rebound effect which increases the production and utilization of Opioid Growth Factor. Cell growth and immunity are increased. It is all very neat indeed.

It is regular naltrexone, short-acting, not slow release.

Exactly. It will block opiates, because it is used to help people with true addiction issues. I do not know of many people who have RLS that this works for, not in any of my groups.

Still, if you do take an opioid and want to start on LDN - as I did and do - it is wise to take them several hours apart. Normally, the advice is to take LDN jiut before bed. But for us that may not be the best timing. Also, I take my opioid in the evening (preciously tramadol, now oxycontin). I take the LDN in the morning, when I get up.

ID and I have written about this before, but to repeat my experience: The LDN doesn’t seem to make a huge difference to my RLS, but I feel it has importantly lifted my exhaustion, ‘dopiness’ and low moods during daytime. That made and makes a huge difference to me! Still on 1,5mg after building it up slowly - because of my sensitivity to meds.

Some doctor also has info and advice along these lines of te combination of LDN and opioids, but I can’t find her website right now. (Jetlagged)

Lash65
Lash65
in reply to LotteM

Hi Lotte,

That's how I take mine. LDN in the morning; Tramadol at night, if needed, for RLS. The LDN absolutely helps my pain from fibromyalgia.

LotteM
LotteM
in reply to Lash65

That is good to know! What about your daytime symptoms or side effects - any effect noticeable from LDN?

Lash65
Lash65
in reply to LotteM

The only side effect that I know of is vivid dreaming. I'm not 100% positive that it's caused by the LDN, but I have heard from others taking this that it's common. In my case, I also suspect Ambien may be causing the dreams.

LotteM
LotteM
in reply to Lash65

The vivid dreams is the first and foremost side effect listed in the info leaflet that came with the LDN.

Lash65
Lash65
in reply to LotteM

Oh is it? I didn't know that. Thanks. Well, mystery solved about that problem anyway.

Happy 4th July to you mad Americans.

As regards ldn, Lotte and I have had very similar experiences with it. It hasn’t helped my rls (yet - apparently it can take months but I’m not holding my breath) but I really think it helps with my daytime alertness and sense of well being.

I don’t take an opioid proper but I do intermittently use Kratom which is definitely interfered with by the ldn. I have to take the ldn at least 6 hours before I take the Kratom otherwise the Kratom doesn’t work. However I can still take both. I just have to be careful with timing. I think it would be different with a very slow acting opioid such as methadone.

There are some for whom ldn worked a treat for their rls and for that reason it has to be worth a try.

Thank you. I’m so glad we’re all getting along better, now that the Unpleasantness is behind us. We’re not so mad these days. Well, not all of us.

What you and LotteM wrote about LDN and opiates got me thinking (although that doesn’t always end well). You both report that taking LDN in the morning helps bring some mental clarity and alertness. And you both report taking either Kratom or an opiate (in the evening, I assume). Could it be that a little Naltroxen in the morning restores clarity by blocking the opiate receptors from any residual opiate or Kratom that may be still in your system from the night before? I know I can still feel the lingering effects in the morning from even relatively quick-dispersing oxycodone, which I take as a bedtime rescue drug on occasion. Just a thought.

Hello Boston.

How the mighty have fallen. It is 12.30, the suicide hour, and I'm under attack. I shall have some Rooibos (Red Bush) tea, prior to considering my wee dram.

Kratom has not served me well for nights, as it has done Dancer. But Dancer has a Red Borneo, I think, which I have been unable to obtain.

But I have found that both Green Indo and Yellow Maeng Da are terrific for daytime use to sweep away the cobwebs. The former is very gentle and gives clarity and cheer when the soul has been assailed. The Yellow gives a fast but smooth road to several hours of what seems like upper-normal brain function. Kratom attaches to the mu-opioid receptors, it is not a blocker. But it does not feel like an opioid, UNique.

I keep the dose very low at one level teaspoon. Not altogether scientific, but good enough. On a higher dose, I think I might become trippy, which is not what I want at all.

I do not take it regularly, as one can become dependent/tolerant. I take it early in the day, with my morning pot of tea, so that it is well gone by bed-time.

Yes, I have a pot for my tea, a very round red enamel teapot, it makes me smile.

Try Kratom for the cobwebs, it cannot harm and may help enormously.

kratomguides.com

I’m sorry you’re being assailed, and that Kratom is not coming to bat for you lately. Perhaps a smidgen of syrupy kindness is called for, in time to allow for several hours of sleep.

I’m hesitant to ask, but my curiosity is nudging me forward: would the addition of a regular dose of methadone or another opiate to your regimen be an option for you, or be of interest to you?

I am considering the possibility myself, but only if IV iron fails to help me in my attempts to reduce or eliminate my other meds ( especially the DAs). I am cautious, of course. But my experience has been that I’ve been able to go through several 10- to 14-day pramipexole washout periods with only oxycodone, without getting strung out. And nowadays I find that I can use 5 mg oxycodone as the occasional rescue drug without getting too attached.

I’m going to hold off on the Kratom for now. I’ll keep an eye on it from a small distance. But thanks for the information.

Anyway, enjoy your Rooibos tea, from your lovely, round red teapot. I also have such a one. Very red, very round, and small. It makes me smile, too, come to think of it. So round. It just sweetly, gently offers me its warm tea with its quiet generosity. It pours from stillness, and invites me to slow down, to sip. To live.

Getting sleepy now, heading for bed. As it happens, I had some methadone earlier to help fill in for the now inadequate 2 mg patch.

May you find some relief tonight, and some sleep.

I hope you are asleep now.

Yes, I am considering the regular use of low-dose methadone, The good doctors Buchfuhrer, Earley, Ondo et al are moving more towards the opioids as the primary medication for some of us, are they not.

(As it has been for most of the last five thousand years, before the oil barons who became the chemical barons who became the pharma barons who are wrecking American society with direct marketing because corporations are persons and your amendments seem infinitely malleable for the rich. Yadayada).

I was recently in touch with Massachusetts General with a view to becoming a candidate for their study. How odd. But one must be taking an opioid at least four times per week to take part. I did not think that they would accept a South African, and so late in the day, but they will. I had a long conversation with a lady called Julia, who invited me to call again should my position alter.

The IV iron will change your life. Perhaps not precisely as you expect, perhaps more than you expect.

I am so impressed by the fact that you have an haematologist. (Note the 'an', rather fine for four in the morning).

Many participants on this site have access to very high-end medicine. Whereas I jump (or crawl) into my ancient skedonk and trolley across my scrubby town, dodging dangerous taxi-drivers, to my GP. I plonk my latest research onto his desk, he looks worried, then we work it out together. He is one of those treasures who does not take his ego to the office, nor does he ever look at his watch.

The ravelled sleeve of care now needs knitting.

I know, don't get me started on the effects of capitalism without restraints. Corporations = individuals, indeed. Were the Supreme Court justices on crack that night?

However, full disclosure: I worked for a biopharma company for 7 years: Wyeth Research, since acquired by Pfizer. I am a bioinformaticist (now retired), i.e. biological data analyst. I can say a few things about pharma from the inside:

1. No argument that the marketing side of pharma is as avaricious as you say. Money talks, way too loudly. But:

2. The other side to pharma is the medical/scientific side. My direct experience with those folks was invariably positive: I have nothing but high respect for the researchers. They are real scientists, and are truly looking for effective medications for all manner of conditions and diseases, at least, those that get support from upper management.

And there's the rub: their fine science is at times stymied by financial considerations, or lack of interest from management.

Basically, we have to remember that pharma is a business, and like any other business, it is governed by the dictates of profit and loss. If we want a different system, we'd need to fund biomedical research publicly, from tax dollars. Never happen on this side of the pond. Perhaps others can do better.

And it's really a high-risk business: it costs somewhere between $500 million to $1 billion to get a drug from the early stages of discovery all the way through 3 phases of clinical trials and onto the market. Most fail in 3rd phase clinical trial, by far the most expensive stage.

So not to defend pharma; but just to hopefully shed a little realism on the situation.

I'm interested to hear about your exchange with the Mass General (MGH) Sleep Lab re: the opioid clinical trial. Not sure I understood the outcome: it was you that demurred, not them, right? And it's because you're not taking an opiate 4 times a week or more? That was my reason for not joining, too. But is it possibly an option for you anyway, if you upped your methadone to 4x week (if that's something you'd even want to do)? I sure don't want to push you into that, however.

Love that you have a willing and low-ego GP. Not so much for me: I just got an irate call from my GP, asking why I'd want to see the MGH hematologist (and here we pronounce our haitches, and skip the "a")? Why not see the hematologist in their network? Well, she got a wordy and slightly snippy reply from me, you can be sure: demonstrate for me that your hematologist understands and has IV iron treatment experience with RLS sufferers, as mine does, and maybe I'll see him/her. And meanwhile, show me a little respect. You seem more interested in your precious network than in my health. Full stop.

Snippy indeed. I love a good snip. Bravo.

Full disclosure: my big brother was marketing director for Glaxo Smith Kline and Boehringer Ingelheim. The latter make Pexola and he was very proud of it. The medical director was a good friend, and he was proud of it. My brother wanted his little sister to be helped, not harmed, but there you go, The best-laid plans..........

No doubt most are well-intentioned, but the way the system works leaves the patient open to unintended consequences, adverse reactions, the reporting of which, past a certain limited time, is most unlikely to happen. And who-pays-the-piper is unknown to most of us.

And even if a doctor suspects harm to a patient, he will, on the whole, bow to the knowledge of the rep, the package insert, and a minuscule paragraph in a desk reference. Until a determined little patient turns up with a big fat file. Green.

Or some Boston Buddhist Stoic gets snippy.

Pexola is a case in point. Search for it on the well-known pharma information sites, and you would think it is a little like aspirin. The package insert I have for the generic does not mention withdrawal, or DAWS, or augmentation. Nothing. It does not say that those with pre-existing ICDs of the mildest sort, like six cups of coffee and a collection of bowties and Georgian Tea Caddies, should not take the drug.

My brother prides himself on his knowledge of drugs, particularly the ones he marketed. He is a trained scientist. But he had absolutely no idea of the scientific knowledge mounting up against Pexola and the damage mounting up against his sister until I told him.

And I'm a painter.

Full disclosure: I do not drink coffee nor do I have a collection of bowties. I have a fine collection of British etchings (really) and a collection of Japanese woodblock prints.

Mass Gen said that the amount of methadone I was taking was insufficient to qualify me for the study but to get in touch if it became sufficient, four times per week or more.

I really wanted to do it to protect my doctor in case things go pear-shaped here with regard to opioids. Mass Gen would be a fine shield against the possible censure of a professional body.

Snippety-snip, snicker-snack, Struwel Peter

LotteM
LotteM
in reply to rls_optimist

Good thinking. But my experience was different. The LDN helped already with lifting the heavy feeling when I took it in the evening. And for me, my mind has always been clear, but previously hampered by what felt like a leaden cloak. As if caged by an unyielding body.

I changed to morning dose of LDN to prevent potential negative effects on my opioid effectiveness for RLS at night. When I started LDN, I was still taking tramadol, but realised later I had become tolerant to it. And even when I took both in the evening ( first tramadol LDN some 2 hrs later initially) I did not notice any interaction - contrary to ID’s experience with LDN and kratom. So - waad.

Parminter
Parminter
in reply to LotteM

Gosh, Lotte, your third and fourth sentences are just gorgeous. You can be the poet of this group.

LotteM
LotteM
in reply to Parminter

You can be serious, parminter! I happen to be a Dutch scientist. In biology. I always thought my written English was very technical. But thanks 😊

Parminter
Parminter
in reply to LotteM

Well, the Dutch have a reputation for practicality, rationality and plain good sense, all of which are admirable qualities.

But then there is Rembrandt.

LotteM
LotteM
in reply to Parminter

AND there is Rembrandt. AND Van Gogh. To me, being really Dutch is to also have a touch of madness and clutter.

Parminter
Parminter
in reply to LotteM

Madness and clutter. I like it.

I read a marvellous article called 'In Praise of Stuff', which I shall track down for you. It was speaking against all the 'You Must De-Clutter' books that are making buckets of money on Amazon.

I have recently discovered some lesser-known van Goghs. I have one as a screensaver. Oh, but that man could paint!

I recall, as a young person, standing in front of Rembrandts, nose up close, wondering how on earth he wove such magic with paint. Now I know!

I used to speak very good Afrikaans, by the way, so we would be able to converse fairly well if I refreshed my knowledge a bit.

LotteM
LotteM
in reply to Parminter

Je herkent het wel en begrijpt me vast! 😎

Parminter
Parminter
in reply to LotteM

Ek kan U goed begryp, Lotte!

Yes, happy Independence Day. No doubt the Tangerine Person (well, more Autumn-tinted, like a sixties carpet), will provide entertainment for the rest of us.

Hidden
Hidden

I have one of those GPs too. I scare her, but she listens and actually works with me...

Caeryl, we are very fortunate. The many patients who are locked in frustrating battle with one or more providers have a very difficult time.

But we still have to sing for our supper!

It does, however, force us to assume responsibility for our condition.

I am entirely in favour of you scaring your doctor, you are adding a little balance to an erstwhile patriarchal system. So, jump up and down on your side of the scale.

Sorry can I ask if there is anyone here that has been able to get LDN on prescription in the U.K.? Also what are DA’s?

Parminter
Parminter
in reply to annij85

No to LDN. But the point of LDN is that it uses very low doses of a very old drug, It should not be difficult to get, because all the potential problems are known, no surprises.

There is a movement towards re-purposing of old drugs, which are known and which ought to be cheap because they are out of patent. Some professionals are tired of horribly expensive new drugs. Of course, Big Pharma will do all it can to stop this.

DAs are dopamine agonists, drugs that work brilliantly but which cause the condition to worsen over time. Sad.

annij85
annij85
in reply to Parminter

Thankyou so much for the reply. There’s a place online that will prescribe LDN and a pharmacist in Scotland I believe so if my GP won’t prescribe I may try that route.

Parminter
Parminter
in reply to annij85

There is no harm in trying. LDN is proving very successful for many conditions, quite a cure-all.

And the doctors involved are determined to find other old, tested drugs for which to find new uses. I think it's a great idea.

But with RLS, don't expect miracles until they happen - we are all a bit different.