LDN (low dose naltrexone)

[LanaCSR]

I have seen a few posts on here about good things with LDN helping RLS with very few, if any, side effects. I have not tried LDN yet. I have been on Lyrica for just over a month now, and although it is working great for my RLS (getting about 90% coverage), the side effects are not good. I would like to find something that will work just as well or better for my RLS without those side effects. I am hearing in this forum that LDN could be that magic pill I am looking for, but I would be interested in hearing from more people who are taking LDN for RLS and what their experience has been before asking my doctor to let me try it when I see her next week.

[Pam34]

Hello

I’m on Pregabalin (lyrica) too, have been for about 5 weeks and get about 90% coverage myself. Any side effects I had have mainly worn off (they were only mild) and were worth putting up with to have the bliss of 6 hours sleep.

What side effects do you have and haven’t they lessened with time? It’s such a shame if you have to stop because of these when you have found something that is working. When do you take your dose and how much?

Pam

[LanaCSR in reply to Pam34]

Hey Pam! Thank you for your reply. I titrated up on Lyrica and am currently taking 100 mg at breakfast, 100 mg at suppertime, and 100 mg at bedtime. The side effects I am having are: swelling in hands and feet and weight gain, twitching, and the worst in my opinion is the EXTREME drowsiness I am having pretty much all day. Since I get RLS in the daytime as well as during the night, I have to take the Lyrica at breakfast to help get 24-hour coverage.

[Bganim1947 in reply to LanaCSR]

Pam is right, those side effects will wear off within 6 months or so. Lyrica is a game changer—i’ve been on a Dopamine Agonist, Ropinerole. It worked great for a few years, then the worse Augmentation imaginable and getting off it was as hard as withdrawing from an opiate. Lyrica takes about 3 or 4 months to get full effect but it’s totally worth hanging in there. I use it with a combination of Tramadol with each dose, and now I have NO RLS symptoms.

[LanaCSR in reply to Bganim1947]

OMG you sound like me!!! The only thing that worked for me was Requip which I am still currently taking at night. But in order to take care of my symptoms during the day, I am on Tramadol low dose 3 times a day and Lyrica 3 times a day. But I have only been on the Lyrica for just over a month now. That is encouraging to hear that the side effects still have time to go away because if it weren't for the side effects I definitely could stay on the Lyrica and the Tramadol and not have any symptoms of RLS. I will stick with the Lyrica and Tramadol for now and see how it goes. I actually tried to wean off the Tramadol in hopes of only taking the Lyrica, but after stopping the midday dose every other day for a few days, my RLS started getting worse. So I am going to stick with the Tramadol 3 times a day along with the Lyrica and pray for the best. I also liked hearing from you that the Lyrica still has time to completely get rid of my RLS symptoms. Since I have only been on the Lyrica for a little over a month and I'm getting about 90% coverage of my RLS symptoms, maybe if I stay with this dose, in a month or more it will work better and completely get rid of my RLS symptoms. I am so happy to hear that this is working so well for you. I truly feel like this Lyrica is the answer to my prayers. Now I just need for these side effects to go away! 😊

[involuntarydancer]

Apparently it can take a long time for the effects of ldn to kick in. It is also recommended to titrate up gently to minimize the sleep disturbance and vivid dreams that some experience. Accordingly, I think it might be better to add in ldn gradually without coming off the lyrica initially. As you titrate up on ldn you could gradually reduce the lyrica. It is not recommended to come off lyrica abruptly in any event.

I took ldn for about 6 months but sadly it really didn’t make much impact on my rls symptoms - I still needed other medication. It did make me feel a lot better during the day however - more alert and like ‘myself’. I gradually titrated up to 4mg daily and was on that dose for about 3 months. I had to discontinue it recently when I was taking a break from my small dose of mirapexin and was relying on Kratom to cover my symptoms. As an opioid antagonist, the ldn rendered the Kratom completely ineffective

On the other hand there are quite a few who have posted on here of dramatic results with ldn. I would say that for the improved daytime experience alone it is worth trying ldn. If you are lucky you might find it benefits your symptoms also.

[LanaCSR in reply to involuntarydancer]

Oh, thank you Dancer! That was very helpful, although I hated hearing that LDN didn't work for you. I may still try it if I keep hearing good results from others. We shall see....

[LanaCSR in reply to involuntarydancer]

Dancer, what scares me from your post is that the LDN kept your Kratom from working. Kratom is my go-to when I have a breakthrough episode of RLS. So if I am titrating up slowly on LDN and still having RLS while trying to find the optimal dose that works for me and I can't use Kratom to help me during those times, I will be totally miserable! 😢

[rls_optimist in reply to LanaCSR]

Hi, Lana, are you taking any other meds for RLS, other than Lyrica and Kratom? If not, here are a couple of thoughts.

There are three main classes of drugs for RLS: DAs (dopamine agonists: ropinerole, pramipexole, and rotigotine patch), A2Ds (alpha-2-delta ligand, like Lyrica and gabapentin), and opioids (such as Kratom, oxycodone and methadone).

As ID says, LDN renders opioids ineffective, so if you continue with an opioid, LDN is probably out. So let's look at the other classes of drugs:

A2Ds: if you continue to have side effect issues with Lyrica, you might try gabapentin. Lyrica is simply an alternate way of generating gabapentin in your system. That means it's got other chemicals that do this, and it may be those that are causing the side effects. I have tried both, and for me, the side effects of gabapentin were much milder than Lyrica. If you want to try this, you'll need to slowly cross-titrate between the two. For this, you should work with your doctor to work out the plan. I can relate my experience, just as an example: I was on 300 mg of Lyrica, like you. Each week, I dropped 75 mg and added 600 mg gabapentin. After 4 weeks, I added another 300 mg gabapentin, so I'm now on 2100 mg gabapentin and zero mg Lyrica.

DAs: there is, of course, a significant danger of augmentation, so these must be approached with great caution. Howeve, if used at low doses, they can be another useful tool in your arsenal. If you are considering this class, the rotigotine (Neupro) patch is probably the best choice, since it's risk of augmentation is much lower than the other DAs, especially if you stick with lower doses, such as the 1 mg patch (the lowest), or even 2. 3 is considered the max for RLS, but if you can stay below that, you'll be less likely to augment.

Opioids: all opioids are very effective against RLS, but should be approached with caution, due to the risk of addiction. You're already taking Kratom, so that may continue to be a good option for you. If you run into issues of availability or legality of Kratom, you might consider prescription opioids. Of those, most RLS experts favor low dose methadone (5 or 10 mg) as it is just as effective as the others, but with lower risk of addiction, longer action, and milder side effects.

Iron: get your ferritin levels checked. For those with RLS, this should be at least 100, and for some, 300 or more. Oral iron may do it, but it often requires IV iron infusion to get it high enough.

As for myself, I am using a combination of these: 3 mg Neupro patch (cut into a 2 mg and a 1 mg part; I apply the 2 mg at 8 AM, then add the 1 mg at 6 PM); 2100 mg gabapentin, split into 2 doses in evening (I don't have daytime symptoms); and 5 mg methadone about 1 hour before bedtime. I am hoping to reduce the patch down to 2 mg total.

Good luck!

[blackcat2 in reply to rls_optimist]

I've been taking LDN 1.5mg for nearly a week and it's had no impact on the effectiveness of the codeine I take for the RLS. My doctors told me that they work on slightly different opioid receptors. Also, it's common knowledge that LDN only block opioid receptors for 4-6 hours. The first day I took LDN, I took it at around 4 or 5pm in the afternoon and my codeine worked fine for the RLS at bedtime. I now take the LDN in the morning as it causes some wakefulness issues for me. But if anyone's worried about not being able to take their opioids or kratom (I wish we could get that stuff here in Australia!), take the LDN in the morning and you'll be fine for bed time.

Obviously the hope is that over time, you won't need anything but the LDN but it does take a while to kick in, some say up to 2 years, so we obviously can't be expected to put up with the RLS whilst waiting to see if it works.

[involuntarydancer in reply to LanaCSR]

You make a very good point, Lana. You have exactly identified the problem. It turned out to be a big problem for me. I had been using mirapexin at a very low dose together with dipyridamole very successfully over about 6 months (I was taking 0.044mg mirapexin 5 out of every 7 days). I had a traumatic withdrawal (is there any other kind?) from mirapexin two years ago following augmentation on a very high dose so I am very aware of my dose. I always intended to take a longer break from mirapexin in the Summer when I was not working so I moved my ldn dose to morning (there is one study where opioid users were able to continue to take ldn when they took it more than 6 hours before the opioid and I used this as my guide). It took me a few weeks of the kratom not working AT ALL to make the connection - how dozy can you get? But when I stopped the ldn the kratom started to work again - almost immediately. Unfortunately by that stage I had increased my kratom intake quite a lot in an effort to get relief so NOW I am going through an unnecessarily unpleasant withdrawal from kratom (I have reintroduced the 0.044mg mirapexin). The interactions of the meds is so difficult.

On the other hand, it is tantalising. What if you were one of the ones for whom ldn is the answer? I really don't know what to say. I am still debating whether to reintroduce ldn myself. I do sometimes need something for breakthrough symptoms myself and kratom is brilliant for that. At the moment though, I feel sufficiently miserable as a result of having to eliminate it (again) that I'm not sure I want to rely on it (kratom, I mean) going forward.

[LanaCSR in reply to involuntarydancer]

I think I may wait on starting the LDN and give this Lyrica a chance to work better for me and possibly eliminate or reduce these side effects. I read a reply from another member of this forum to my post that gave me hopes that the Lyrica could eventually start working better for me and the side effects still have time to go away. So I think I'm going to try to give this Lyrica a chance instead of trying to switch immediately to another medicine. Wish me luck. And I wish you great luck as well in trying to figure out the Kratom in getting rid of your RLS. I wish you the best!

[Pam34 in reply to LanaCSR]

Hi Lana

I think you have made a good choice. You have something that is working, if the side effects haven’t eased in a couple of months (assuming they are bearable) then look at your options then. There is nothing to say that by switching to something else that that too wouldn’t cause side effects. Unfortunately they seem to come with every drug 😢

Incidentally you say you are on requip as well - what is your dose? I’m worrying that as you say you have daytime symptoms of RLS that you may be augmenting on the requip? It’s unusual to suffer symptoms all through the day.

Pam

[involuntarydancer in reply to LanaCSR]

Oh the very best of luck, Lana. I really hope those side effects settle down and the lyrica is your salvation. And thank you for your good wishes. I don’t know what I’d do without the support of this forum.

[Ert223]

LDN partially blocks the opiod receptors...the natural opiods build up and

push into the cell which gives relief to rls . Do not take it if your taking opiods

opiates etc. I cut back on my norco...took like .1 mg of LDN and was dancing

around like a lunatic slamming norco like it was m m candies....Got to get

off the juice first. You did not mention taking opiods/opiates so you might

be okay...might be...good luck

[LanaCSR in reply to Ert223]

Thank you!!