LDN treatment for RLS

[Lstenbro]

I have had RLS for many years. Started with pramiprexol 0.18 and that worked fine, but I got insomnia as side effect. I have tried gabatamin also with no effect, exept terrible side effect! But two month ago I asked my doctor to try LDN which is also dopamin aginoster. I works very well so far and no side effects.

[ChrisColumbus]

Good news. There are mixed reports about the effectiveness of LDN for RLS, and it's good to hear a positive experience.

[Lstenbro in reply to ChrisColumbus]

I know. But I thougt it was interesting to try. If the effects could be positive there is only win. But the withdraw from pramiprexol is something to consider and dont give UP during those weeks.

[Hidden]

That's great news. What dose do you take and what time of day do you take it?

[Lstenbro in reply to Hidden]

I started with low dose 1.5mg. The withdraw effect from pramiprexol was terrible the first weeks. Redused from 0.18 to 0.09 and 0.045 the last days. After that it took four days and the RLS was gone. After 8 week I am on 3.75 mg and it works fine. I have been up to 4.5 mg but I will test lower dose to find what is most effektiv.

[Lstenbro in reply to Hidden]

I take the dose in the evening around 9. In the beginning it effected my sleep and I used half the dose earlier in the day.

[Washmo]

I was prescribed LDN (2.5) and was very hopeful, but didn't notice any reduction in RLS at all. Tried it for a month. Debating whether to continue or move on (as I sit in a tub of hot water trying a last ditch effort to try and quiet my legs so I can get any sleep tonight) 😢

[Lstenbro in reply to Washmo]

Maybe you should increase the dose...I have taken 3.75 lately and started at 3 mg. You can go up to 4.5 before you give up.

[Drls]

Hello, what is LDN? I’ve not heard of it, like many people my RLS is completely out of control so anything is worth considering - also where are you? Is this available in the UK? Thanks

[Lstenbro in reply to Drls]

Low dose Naltrexone. I am in Norway

[Goldy700 in reply to Drls]

A little more information for you

The LDN works by briefly blocking the endorphin receptors of the body, usually at night for a few hours.  In response the body  results in a reactive increase in the production of endorphins, which should result in a reduction of painful symptoms and an increased sense of wellbeing. A lack of endorphins is linked to RLS.Increased levels of endorphins should be expected to stimulate the immune system, promoting an increase in the number of T lymphocytes. This effect was observed in Dr Bihari's research. This increase in T-cell numbers apparently restores a more normal balance of the T-cells such that the effects of the disease process are significantly reduced.   It provides a new, safe and inexpensive method of medical treatment by mobilizing the natural defenses of one’s own immune

[Drls in reply to Goldy700]

wow - does anyone know what the side effects can be? Thanks

[Lstenbro in reply to Drls]

In the beginning headace but that could also come from withdraw from pramitrexol. Some people get insomnia and take it in the morning. I had that in the beginning and took half dose morning. No I take the dose in the evening.

[Lstenbro in reply to Goldy700]

It also increase dopamin level.

[Lstenbro]

Low dose Naltrexone. I am in Norway.

[Memmy]

Glad to hear it's working well for you. Did you first stop taking pramipexol before you started the LDN. I think I'd like to try it as I'm afraid my altering pramipexol with tramadol will stop working. Stopping sugar has helped me enormously. They say that both pramipexol and tramadol eventually cause augmentation

[Lstenbro in reply to Memmy]

I used both the first two or three weeks. Redused Pram from 0,18 to 0,09 (1/2 tablet) and last week to 0,045 (1/4 tablet). When I stopped with Pram totally I had withdraw symptoms the first four days and then it stopped.

[BocaMom]

Funny you should post this - I just started a week ago after thinking about it (and hesitating) for a couple years. Still at 1.5 mg (titrating up to 4.5) and it has been great so far. Increased sense of “wellness” and I have more energy.

I don’t take any DAs (thanks to this wise group - dodged a bullet) and am trying to wean down off a small dose of Gabapentin. Gave up on lyrica last year due to terrible side effects. Have been getting my ferritin up too.

Just can’t believe how long it took me to try LDN. Of course it’s the one thing I’ve held off doing. Legs are doing well - dare I say slightly improved? Certainly no worse, even coming off Gabapentin. Keeping my fingers crossed.

There’s a good group on FB if anyone is interested.

[Joolsg]

That's fantastic news. I know one member, FlowerGirl, used LDN at micro doses to reduce pregabalin and Oxycontin. She then increased to 4.5mg and her RLS was completely controlled. She left the forum as she has no more RLS.It clearly works very well for some people.

Another drug to add to the treatment list.