Has anyone tried Low Dose Naltrexone ... - Restless Legs Syn...

Restless Legs Syndrome

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Has anyone tried Low Dose Naltrexone (LDN) for RLS?

dido241 profile image

Hi, I'm fairly new to the forum and have suffered with RLS for 50 years - but it has become a lot worse in the last 5 years. I have read with interest lots of posts regarding different treatments. I'm not at the stage where I want to take a powerful medication permanently so tried the Iron supplements. For 2 weeks I thought it was a 'miracle cure' and wished I'd known about this simple 'cure'. However, on the third week, the RLS started to return and by the 4th week, it had become the same as always so I stopped taking the supplement.

Anyhow, thinking about treatments I remembered that a well known GP in the UK was on TV about 20 years ago saying that LDN was going to be a great help to many different patients because it helped with all kinds of neurological, immune system, etc disorders and also that it was extremely safe to take and cheap to prescribe so, having had several chronic conditions develop in the last 10 years I've been waiting to see what happened with this fantastic drug but all I have ever read was that the NHS would not prescribe it to anyone for any condition. I don't see any change in this recently so would be interested whether anyone, anywhere, has tried it for RLS and whether it has been successful.

14 Replies

I know of 2 people who have used it for RLS and with complete success. Both have left the forum as they are no longer in need of help.

However I suspect it may not be 100% successful for everyone.

Flowergirl used it in micro dose to get off oxycontin and then increased the dose to 4.5mg. She said it completely eliminated her RLS.

I want to try it but need to work up the courage to reduce my oxycontin. I’m pretty sure I’ll have to go through a bad RLS stage before the LDN kicks in, if at all.

800 mg of Magnesium has been working for me thus far....🤞

Jadawyn profile image
Jadawyn in reply to Budness

Long may it serve you.

Magnesium chelate or oil worked for me marvelously for 6 years (and during light periods of rls homeopathic mag did the trick), but rls now keeps worsening despite large doses of both tablets and >5 applications of oil in the evening.

A friend who also has MS with a bottle of LDN she no longer takes (she doesn't have rls, it was for another use) offered it to me.

I've also ordered some methylene blue that I've recently found out about.

I think I’ve tried everything at one point or another. LDN did not work for me as an option to help withdraw from pramipexole- it might be something that helps once we are free from the pramipexole but it has been useless so far.

Hi,

there are ppl here who use ldn to control rls, I'm one of them. It works from the first time you use it. It takes months to clear side effects and to get proper dosing and timing.

cheers

Tywiesz

dido241 profile image
dido241 in reply to

Hi, when you say it takes months to clear side effects, what are the side effects you experienced? Also, are you located in the UK: if so, how did you manage to get it prescribed?

in reply to dido241

Hi,

I'm not in uk but that does not matter, prescribes all over the world:

ldnresearchtrust.org/LDN_Pr...

side effects, insomnia, headaches, GI problems, vivid dreams stuff like that. Or buy naltrexone on line 50mg tabs and do 1.5mg starter yourself. You need to start reading about LDN. Main idea is start 1.5mg and increase sloooowwwlyyyyy weekly. Take it at 10pm+. I take it 1-2am when I go to washroom.

cheers

Tywiesz

I tried LDN last year for 3 months, while still continuing Oxycontin 10mg. During this time I tried repeatedly to reduce the Oxycontin, but didn't succeed as it increased my symptoms again, which didn't settle.

Thus, LDN was unsuccessful for me. My RLS is severe and daily.

in reply to LotteM

Hi,

of course ldn can't be successful while taking opioids unfortunately. But I'm curious you are on oxy and still got rls? Why?

cheers

Tywiesz

LotteM profile image
LotteM in reply to

It can be taken together, but not at the same time of day. And I still took oxy because it works very well for my RLS symptoms. However, it doesn't cure my RLS, I still have symptoms if I don't take it. I switched to kratom a week ago.

in reply to LotteM

Hi,

good luck with kratom. What I know ppl who take opioids daily not possible to take it every second day. I'm not judging, I'm far away from it. I do take it too. But LDN won't than.

cheers

Tywiesz

Curious about the iron supplements working then not. Have you had lab tests or iron and ferritin, etc? I am always amazed with the incidence of RLS due to pregnancy and the apparent growth demands of the fetus depleting iron then the disappearance of RLS after delivery of the baby. And of course it doesn't effect all pregnancies.

There are quite a few other posts about LDN - you can search all the posts in this RLS forum. I do remember one from a couple of years ago with a lot of information.

Here is the post from 3 years ago about LDN...

healthunlocked.com/rlsuk/po...

I tried ldn for a few months. It did not have any impact on my rls. It is difficult to experiment with as it is preferable not to take it with an opioid. Also, as I understand it, getting the dose right can be important. However, I tried it on varying doses and it didn’t really touch my rls symptoms which was disappointing.

As Jools says, there are a few people who reported complete success.

in reply to involuntarydancer

Hi,

so when you tried ldn, were on opioids? That can kill the whole LDN idea. But there is this fracture of a percent of unfortunate cases that LDN won't work. Also about 6-8% ppl won't continue due to severe adverse effects of LDN. I've given it up three times already but keep coming back to work it out due to positive effect of LDN (side effects still on,) So it is an angel/devil thing like, two faces at the same time.

cheers

Tywiesz

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