Restless Legs Syndrome (RLS) Discussion Board

I've been referred to a new neurologist, I guess for a second opinion since the two neurologists near me gave up. This new neurologist that is two hours away may want an answer to why I never tried Horizant (gabapentin enacarbil) besides the $600 a month cost. I've been through gabapentin, L-Dopa, the DAs and can attest to how I did on them.

Have many of you tried it and did you get real lasting results. I researched the site but did not find anything very definitive.

I've been on 2 mg Clonazepam and 300 mg Lyrica for four years and various doses of Clonazepam for over 25 years. 10 years ago RLS was just a nuisance but has turned into nightly struggle, some better than others but many nights I hardly sleep at all. I'm 65 so I worry a lot about the future.

Thanks in advance for any input. Rick

I saw one of the RLS experts for awhile and he insisted that I try Horizant. I had been taking gabapentin for migraine prevention and the gabapentin wasn't helping with my RLS beyond helping me sleep. I tried Hroizant for two weeks and felt that it didn't do anything more or less than the gabapentin. That could be either that neither one helps with my RLS or that I don't have a problem adsorbing gabapentin. Either way, he couldn't argue when I told him that it didn't provide $600 of improvement. That disappointed him because he had run part of the Horizant clinical trials and he really believe in the med.

You might respond better than you did on gabapentin, because g. encarbil is absorbed better. But perhaps no better than the Lyrica you're on. The answer as to why you've never tried it, besides the cost, is the pretty high chance that it won't do you any better than gabapentin or Lyrica. (d-uh). Sounds like you're going to have to continue to do a lot of advocating for yourself

10 years ago I used gabapentin to get off clonazepam over 9 months. It was very difficult and I was not at all satisfied with RLS then. A year later I was back on. Looking back maybe I should have stuck it out a while. Options are few and this one is expensive. Thx for the replies.

Stainless wrote: ↑

Mon Oct 31, 2022 2:22 pm

I've been on 2 mg Clonazepam and 300 mg Lyrica for four years and various doses of Clonazepam for over 25 years.

From what I remember from my discussions with several doctors (a few years ago), Horizant is basically Gabapentin but allows higher doses. Gabapentin seems to have a limit where higher doses won't increase the efficiency anymore, if I remember correctly around 1800mg a day.

Lyrica and Horizant/Gabapentin work against the same receptors, so if 300mg Lyrica doesn't work (which is a pretty high dose for RLS) then I am pessimistic about Horizant.

Horizant is a pro-drug of gabapentin, meaning it turns into gabapentin once it's been absorbed into the body. It was designed to eliminate the problems of erratic absorption that gabapentin has.

Lyrica and Horizant/Gabapentin work against the same receptors, so if 300mg Lyrica doesn't work (which is a pretty high dose for RLS) then I am pessimistic about Horizant.

I'd be pessimistic too, but there is always a chance that a different medication, even if similar, will have a different effect for someone.

Interesting views should i ever use it.

Hi Rick
I use a company called Truax for Horizant- less than $100 per month.

I've been on 300mg Gabapentin for probably 11-12 years now and it only really gets me drowsy enough to sleep, and doesn't relieve any symptoms. I recently saw a new Neuro (3rd one, the other 2 I gave up on) and she wants me to try Horizant. I balked at the $600+ and expressed my dismay that an extended release version of Gabapentin cost so much more and am very skeptical that it would bring any improvement. Reading this thread seems I was correct in that assumption. I will give it a try though

I got the the prescription through TruAx for significantly less, so if you're in the US, it might be an option if Horizant works for you

Horizant isn't so much an extended release form of gabapentin is as it is a modified form that enhances adsorption into the bloodstream. Gabapentin is only adsorbed by a short length of the small intestine, so you may not get a consistent dose day-to-day depending upon the contents of your stomach and the rate the food passes into the intestines. Horizant was modified to allow it to be picked up along most of the length of the gut. This means more consistent dosing, but also means that the part that you missed if it had been gabapentin is picked up a bit later (hence the idea of extended release).

I tried it from samples that my doctor provided and didn't find that it did anything more or less than gabapentin (I take 900mg at night). It doesn't help my need to move symptoms, but it is the only thing that makes me drowsy enough to fall asleep in a reasonable perioid of time.

Been using it for two weeks now, with no noticeable difference than normal Gabapentin. I got 30 (600mg) tablets in the first shipment. 30 being the minimum I could get as I told them I have very little confidence it would make any difference. The pharmacy called yesterday to ask if I wanted to refill and I declined.

Been on Horizant ER 1200mg/day consistently for 5 years, despite having changed everything else many times in this time period. My experience is like other posters: really good for sleep, not so much for need to move symptoms. Often, I just need to get to sleep and stay asleep to avoid having symptoms that will keep me awake, if that makes sense. I am very lucky to have amazing prescription coverage so cost is fortunately not an issue. However, if I were faced with hundreds of dollars a month, I’d skip it, for me, not nearly enough benefit to justify gi-normous expense.

I was suffering from significant daytime RLS even while taking 60mg/day. Once I increased the dose to 1200mg/day, my daytime RLS became well-controlled.

I have been on Horizant with less than spectacular results and am trying to get on methadone.
But, importantly, if you want to try Horizant you should ask your MD to order through Truax Patient Services in Minnesota. The cost is about $60 per month. I also balked at the price and my pharmacy told me about Truax. It is Azurity Pharmaceuticals
I hope this is helpful

Thank you. Azurity is the manufacturer for Horizant. With the recent changes that the FDA has made about allowing imports from Canada, my guess is that Truax is importing Canadian Horizant. Horizant is still under patent protection in the US. The first patent expires in April '25 and the second in November '26. Judging from past drugs, generic Horizant will probably not be available in the US until well after early '27.