Low dose Naltrexone

[BluGenie]

I just had a health care person suggest I research Low Dose Naltrexone for my RLS.

so I’ve been reading on it a bit and have seen cases where it’s helped people. There was even a post on this site, I believe about 2014, regarding this. But I’ve never seen any current discussion on.

Has anyone tried it ? If so, how has it worked?

Thank you

[SueJohnson]

It can help as you have read. Don't use any opioids at the same time.

Other posts healthunlocked.com/rlsuk/po... healthunlocked.com/rlsuk/po... healthunlocked.com/rlsuk/po... healthunlocked.com/rlsuk/po... healthunlocked.com/rlsuk/po... healthunlocked.com/rlsuk/po... and many others. Just put LDN in the search box.

[BluGenie in reply to SueJohnson]

Thank you Sue

[Joolsg]

Not if you are still on Pramipexole.So first, go through withdrawal, then when you are about to drop the last dose of Pramipexole, you can start LDN.

It has helped some people, to varying degrees.

In the UK it is only available on private prescription from private clinics and costs around £40 a month.

[BluGenie in reply to Joolsg]

Why do you need to wait until off of pramipexole?

[Joolsg in reply to BluGenie]

Because Pramipexole over excites all your D1 dopamine receptors, driving the worsening of RLS. It breaks through all other treatments.So, if you need LDN to treat severe RLS, there's no point adding other meds until you get off the drug that's causing the severe RLS.

Recently we had a woman who was taking Pramipexole AND Buprenorphine. Of course the severe augmentation symptoms from Pramipexole broke through, and stopped Buprenorphine working.

You can START LDN about 3 weeks before the last dose of Pramipexole and it MIGHT help withdrawal symptoms.

[MrCrow in reply to Joolsg]

Wonder what happen to the Ecopipam trials that were going on. Ecopipam is supposed to block overexcited D1 receptors.

[Joolsg in reply to MrCrow]

I know! I've written to head of rls.org to find out.Last I heard, Dr Stefan Clements had done a deal with a pharmaceutical company and they applied for patents in US.

Trials are underway, but I suspect they want LONG trials. Dopamine agonists were only trialled for 12 weeks. Of course they worked brilliantly and were licensed and millions of RLS patients soon discovered they weren't so brilliant!

[BluGenie in reply to Joolsg]

Thank you

[amrob123]

I belong to an LDN Facebook group. The results there are very mixed with some people finding complete RLS relief, others no change, and for others, worsened symptoms (sometimes only temporarily worsened). So the only real way to know is to try it for yourself.

[MrCrow in reply to amrob123]

So there's a risk of permanent worsening with this?

[BluGenie in reply to MrCrow]

I don’t know. I had never heard of it before.

[amrob123 in reply to MrCrow]

The worsening is while taking LDN.

[Oscarcat63]

I can not understand WHY this drug is prescribed when opiates bring relief as it is an opiate antagonist, which sounds counter-intuative to me ?It didn't help my rls either

[involuntarydancer]

I tried it and it did nothing for my rls but may be worth a try as it is an idiosyncratic condition. There definitely was someone on here who found it helpful - maybe flowergirl?

I would however absolutely agree with Julesg that it is not worth trying until after you have discontinued any dopamine agonist (using an extremely gradually titrated reduction) and the same has been completely washed out of your system. Also, as another poster stated, do not take naltrexone in conjunction with opioids.

[BluGenie in reply to involuntarydancer]

thank you

[Avart]

does LDN only work with the night time protocol, I am assuming? I have found it does disrupt sleep thiugh they say you must start low.