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Restless Legs Syndrome

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Hi all (sufferers of RLS)

Help1963 profile image
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Hi everyone, just wondering has anyone tried the extended-release version of Gabapentin 600mg Capsules. My understanding the brand name of this medication is Horizant and it is only available in the USA ? Apparently, it has way better results than the normal Gabapentin due to its single - once a day dosing and its extended release and its Absorbtion qualities. any feedback would be greatly appreciated.

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Help1963
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SueJohnson profile image
SueJohnson

It lasts 24 hours so is useful if one also has RLS during the day. Otherwise it is not any better than regular gabapentin nor pregabalin although a few people have better results just as a few people have better results with pregabalin than gabapentin and vice versa. Since most people only have RLS at night it is not used much. It is not on the approved medicines for Australia. In the US it is very expensive although one can get it cheaper by contacting Horizon and getting their prescription savings card if eligible.

FLfish profile image
FLfish

I'm in Florida and wanted to try it, because my RLS is constant, but price makes it out of reach for me. Was very bummed. Good luck!

SueJohnson profile image
SueJohnson in reply toFLfish

They have a prescription savings card that if eligible makes it quite reasonable. Go to their website. If not eligible you can order in from Truax Pharmacy which makes it fairly inexpensive. (tps-rx.com/)

UsableThought profile image
UsableThought

Sue is correct in that Horizant is not actually any more effective than plain gabapentin. But I don’t think it’s the 24 hour aspect that is the main selling point for most persons who are prescribed it; rather, it has to do with making dosing easier.

To explain in detail: I take it (I’m in the U.S.) and in my case, I lobbied my physician pretty hard to be able to get it in preference to plain gabapentin. It is very expensive, but I get a substantial price break similar to what Sue describes - my physician had to write a note for me to a specialty pharmacy that has an arrangement with the maker of Horizant to sell at the reduced price. I don’t really understand the economics involved, but I’m grateful for being able to get it at all.

Now as to this business of dosing: Gabapentin by itself must be absorbed through a very small area in the small intestine, and the size of this very small area varies, depending on your genetics; so the effective dose can very widely from person to person, and the only way to find out your personal dose is to slowly raise the amount of gabapentin until you reach the point where it is effective. So this can make titrating the dose a very drawn-out process.

By contrast, Horizant is in a different chemical form when you take it, and in this form is much more easily absorbed in the small intestine. Once in your body, it is recycled and converted into gabapentin without having to go through that small spot in the small intestine. Dosing becomes much easier, because the 600 mg standard dose of Horizant is effective for nearly everybody. My RLS specialist does say that she has some patients who benefit from taking two or even three of the 600 mg pills, but they are exceptions.

Anyway, I wanted the Horizant because the titration for gabapentin looked like it was going to take a long time in my case. So it was a matter of convenience, ultimately.

As for Horizant being effective throughout the 24 hour day for RLS symptoms, I do notice that the manufacturer’s marketing makes this claim - e.g. see horizant.com/why-horizant/

However I have read a ton of studies on Horizant, including the pilot studies where they were determining the effective dose; and I have read many of the “best practices for RLS” white papers by the top authorities in the U.S., including the most recent of these; and I don’t remember the 24 hour aspect ever being stressed in either the studies or the best-practices papers. What the best-practice papers seem to recommend for extended RLS symptoms during daytime are the long-term opioids such as methadone or buprenorphine. Ironically, these same opioids are often prescribed for persons who only have nighttime symptoms. In my case, I have only had daytime symptoms during periods of augmentation caused by Mirapex; otherwise my symptoms are late-evening & during sleep (PLMD). I also take a low dose of methadone to go along with the Horizant, as well as a very small remaining dose of that devil, Mirapex. (I have other health issues I have to focus on at present, but if I ever get the time, I’m going to resume trying to taper down the Mirapex entirely.)

Another thing that makes me skeptical of the 24-hour claim is that even for just nighttime symptoms, you need to take Horizant at a specific time prior to bedtime (typically 5 to 6 hours ahead) for it to be fully effective.

To sum up: If you’re able to get Horizant at a price that you can afford, sure, it’s an effective drug. But if you can’t get it, and can only get straight gabapentin, you can simply work with your doctor to get the proper dosing. It takes more time, but the end result should be exactly the same in terms for controlling symptoms.

SueJohnson profile image
SueJohnson in reply toUsableThought

But pregabalin only needs to be taken in one pill and pregabalin is basically the same thing as gabapentin and Horizant.

UsableThought profile image
UsableThought in reply toSueJohnson

I wouldn’t say pregablin is “basically the same” as gabapentin - there can be significant differences, especially with side effects.

They are considered to be in a similar drug class in terms of action but are different chemically. So again turning to side effects, while they share the potential for respiratory suppression, other effects can differ markedly. And although studies seem to show similar effectiveness for RLS, they apparently show differences in effectiveness for a number of other pain conditions. In my case I tried pregablin for neuropathic pain, but had to stop after 10 days due to rather surprising weight gain - one of a number of side effects not shared by gabapentin (although very mild weight gain can occur). Some folks with RLS will do okay with pregablin but some like me won’t be able to tolerate it.

See below for a listing of some of the differences - it is not a journal article but looks fairly responsible:

drugs.com/medical-answers/d...

I would add that both drugs have a long list of very scary side effects, but most of the really scary ones seem rare for either. Normal for a lot of drugs out there.

SueJohnson profile image
SueJohnson in reply toUsableThought

I agree they are not "technically" basically the same drug but they both have the same effect, they both have the same side effects although they might be more likely on one drug than the other, and they are interchangeable. You can switch from one to the other and back again. Saying they are basically the same drug conveys my point without getting technical.

And interestingly the side effects are affected by the individual. Although one is more likely to gain weight on pregabalin, some people gain more weight on gabapentin, and most don't gain more than a couple of pounds on either.

UsableThought profile image
UsableThought in reply toSueJohnson

I do see your point and certainly don’t want to argue.

However I would say that my interest in the technical details for medications is that very often, I as the patient have had to be the one looking out for myself, as first my primary care physician & now even my RLS specialist have huge gaps in their medical education & thus huge gaps in their knowledge of what these drugs can do to people if not properly monitored.

For example, over a decade ago it was me, and not my primary care physician, who did the reading to realize I was experiencing augmentation from Mirapex. And this past year it was me, and not my RLS specialist (!!), who realized that I was experiencing symptoms of sleep apnea from the combination of the Horizant and methadone that she had prescribed me! I had been complaining about feeling worse as we increased the methadone dose, but she has zero education about sleep apnea. Had I not been proactive & simply obeyed her advice I would have been in a very bad spot indeed.

Same thing with the Lyrica (pregablin) - because I could look things up I was able to realize very quickly that the Lryica was the cause of the really bizarre weight gain I was experiencing - I didn’t have to wait until I could talk to the neurologist who had prescribed it (although I did eventually get to talk to him & he confirmed he had other patients who experienced this with Lyrica in particular).

I do agree that many people don’t want to burden themselves with the technical aspects & would rather rely on their doctors; if they have a good team then this works very well. Also a forum like this can be a wonderful resource with knowledgeable folks like you sharing the important points.

wantokporo profile image
wantokporo

I can't find this at the moment, but about a year ago I connected with an online pharmacy that sold Horizont at 10% of the cost in the US, no questions asked and prompt delivery. I wrote about it then here, don't know if they still exist.

SueJohnson profile image
SueJohnson in reply towantokporo

You were talking about Truax Pharmacy which I mentioned above to FLfish and I got it from you.

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