Low Dose Naltrexone anyone?

[CowgirlArtist]

I found an article today that talks about a drug that has apparently been around for a while. It's been approved for opioid addiction but since it's already off-patent and relatively inexpensive, pharmaceutical companies won't bother with it for other uses, because trials are very expensive and sales of the drug wouldn't be profitable. Low-Dose Naltrexone is used off-label and has helped with mast cell activation syndrome, long Covid, MS, IBS, fibromyalgia and RLS, just to name a few. I'm trying to talk my doctor into letting me try it. I might have to bring the article along with me to my appointment. I was wondering if anyone had used or heard of it?

[CowgirlArtist]

In answer to my own post, I see there are other posts here about the drug, some from as long ago as 7 years so I'll be doing some reading!

[amrob123]

I have used it on and off for a couple of years. 4.5mg is the standard dose, however i can't get past 0.2mg because i experience insomnia from it (i take it first thing in the morning).

At the very low dose i take, I haven't noticed any particular RLS/PLMD benefit. I do find that it helps with daytime energy and also counteract some of the sedative effects of the medication i take.

One or two others on here seem to have had success on it and if i recall correctly, there are a couple of people on Reddit who also found it helpful for RLS.

[CowgirlArtist in reply to amrob123]

Thank you amrob123 for your response. I'm sorry it didn't help very much with RLS. I've heard that it can vary from person to person. The only problem I have is that I'm on methadone and even though every one here says not to take it with opioids, I've also read it's used for opioid addiction. Both of these statements can't be true. I'll have to talk to my neurologist. But thank you for your response.

[amrob123 in reply to CowgirlArtist]

Thanks CowgirlArtist. I believe when naltrexone is used for opioid or alcohol addiction, one isn't supposed to take opioids or alcohol with it. And if one does, the naltrexone is supposed to block the positive effects of the drug (i.e. the euphoria).

Having said that, some people say if there is sufficient time between the administration of the naltrexone and the opioid, then one doesn't impact the other but i don't know how sound that is.

Also, the dosing for autoimmune conditions etc is very different to the dosing for drug addiction. The standard dose for the former is 4.5mg whereas the standard dose for drug addiction is around 50mg, so more than 10x the amount.

[CowgirlArtist in reply to amrob123]

Thank you for the info.

[Niewiem in reply to amrob123]

well I drink and take opioids with naltrexone and happy with it, it all depends how much one takes

[Niewiem in reply to amrob123]

it is difficult to get the right time and dose, 4,5mg too much if you just jump on to it, 1.5mg at 1-2am and take it from there.

[amrob123 in reply to Niewiem]

I agree. I've never actually taken 4.5mg, I think the maximum i have taken is around 1mg. Why do you suggest taking it at 1am to 2am. Is that to help avoid LDN induced insomnia?

[Niewiem in reply to amrob123]

insomnia, yes but it does not go away just a bit less. So you are lucky 1mg, ehh? Won't cut it for me. At 1mg I love not too much side effects but no impact on rls. Do you experience side effects? Nausia, stomach, headache I got it all. But I tried gaba and dopa and side effects even more terrible comparing to ldn. What do you take on the top of ldn?

[SueJohnson]

You definitely don't want to take it at the same time as methadone as it can precipitate withdrawal which you don't want.

[CowgirlArtist in reply to SueJohnson]

It seems like a weird way to get off opioids, to just stop them suddenly? Just because you are on naltrexone. Thanks for the info. I'm waiting to hear back from my Mayo neurologist.

[Joolsg]

I have 2 friends that use it for MS and Crohns. I also know an RLS patient who used LDN microdoses to get off Oxycontin- which wasn't helping. She then increased dose to 4.5mg and it completely resolved her RLS.She's left the forum now, as she's 'treated'.

[CowgirlArtist in reply to Joolsg]

Thank you! I love to hear that~

[Joolsg in reply to CowgirlArtist]

It's my backup plan if the backward UK health authorities ever ban Buprenorphine.At least LDN can be bought privately for around £45 a month.

[CowgirlArtist in reply to Joolsg]

I guess I'm not familiar with Buprenorphine. Is that the generic or brand name?

[Joolsg in reply to CowgirlArtist]

Generic. Similar to methadone. Used to help addicts off heroin. At low dose it is very effective for refractory RLS, especially after dopamine agonists, as it has a half life of 25 hours. Since starting it in June '21 I have zero RLS syn.

[CowgirlArtist in reply to Joolsg]

Wow! So glad it's working well for you!

[Joolsg in reply to CowgirlArtist]

Not just me. There are now several people in the UK who have had miraculous results with low dose sub lingual Buprenorphine. If you can resolve the side effects ( nausea/ constipation etc).

[Niewiem in reply to Joolsg]

there are tricks to buy a monthly ldn supply but such way that it lasts 6 months. I know coz I do it. When you go for ldn I could tell you how to do it

[Joolsg in reply to Niewiem]

That's very helpful. Thanks.

[Niewiem in reply to Joolsg]

you mentioned micro doses? you know 4.5mg is not? it is a low dose. micro= 0.0...mg. just so we are on the same page. Free of rls is possible but free of suffering side effects is not.

[Joolsg in reply to Niewiem]

Yes I know that. That's why I said she used microdoses to get off Oxycontin and once she was OFF Oxycontin, she THEN increased dose to 4.5mg.Also, she didn't mention any side effects.

At present, I am completely free of RLS AND side effects.

What side effects do you experience on LDN? I have many acquaintances who use LDN for their MS or Crohn's disease. They had minor side effects initially, but they settled after the first few months.

[Niewiem in reply to Joolsg]

yeap, I misunderstood your microdoses hahha. My side effects, insomnia so I have 3 parts of sleep during the night, morning nausea and during the day headaches. But there are other side effect positive like my hands don't have any pain , been diagnosed with ostio, knees don't have this sort of needle like thing when I go for a run. Alcohol works a bit diff.too.

[Joolsg in reply to Niewiem]

Interesting. I had severe nausea for 10 days on Buprenorphine. I used cannabis oil with 20% THC for a week and it sorted it.Insomnia is very common. Often, adding cannabis or low dose gabapentin/pregabalin can help.

And Interesting about alcohol. Since I started Buprenorphine alcohol just doesn't appeal any more! I think I've had 6 glasses of alcohol in the whole of 2024. Very odd for me as alcohol never affected my RLS.

[Niewiem]

yes, for years. It is complicated to find proper does and coping with side effects.

[art37]

I have RLS and end stage kidney disease, my specialist has me on 50 mg of palexia at dialysis for my back, she has now added it to my nightly treatment for RLS but a dose of 25mg. It seems to be helping at night but the dialysis machine sets my legs off for the four hour duration of dialysis. I am also on sofril and cannabis oil and magnesium for my legs. The moment they turn the machine off my legs go still. I think we all have to just keep trying different meds till we find one that works for us individually. I dont like sofril, sends me to sleep in an instant any old time so have given up driving.

Re

[marsha2306]

I tried it for a few months several years ago and it didn't help.

[Niewiem in reply to marsha2306]

sorry to hear that. were you going on ldn slowly or boom 4.5mg?

[707twitcher]

I tried 4.5mg LDN in the morning while taking buprenorphine at night. It made my RLS really bad for the 4 days I was on it. I do believe it blocks the opioid effect - at least for me.

[Niewiem in reply to 707twitcher]

I can see that happening, blocking