Gabapentin : Do have a look at this... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin

Elsie77 profile image
13 Replies

Do have a look at this link as we may find that a three times per day does may supress this so that the evening dose is more effective? This note describes a total daily dose of 2.7g as the max seen not necessarily licenced. You are on 1.1g daily currently compressed into the evening. To start to increase the dose we will need to do this by adding some in earlier. This will essentially increase the evening dose and as you have found limit the SE, but also may make the RLS less active when you start to try to use the higher dose in the evening. You do not have to maintain a 24hr gap.

This was the response from my dr when I asked for a face to face appointment to discuss the problems I’m having on 1200 mg split between two doses at 7.00 and 9.00pm, I get an average of 3 to 4 hrs sleep a night, no symptoms during the day, I have had awful problems with my speech when I have tried to increase doses, difficulty recalling words and stuttering, the Dr is aware of this. The link is cks.nice.org.uk/topics/rest.... The thought of taking 900 mg 3 times a day fills me with horror, and anxiety. Am I misreading this advice? Am I getting unnecessarily worried? Comments please.

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Elsie77
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13 Replies
SueJohnson profile image
SueJohnson

If you are not in the UK, which I am not, you can't access that site. I would love to read it. Is there anyway to copy and paste it here?

Elsie77 profile image
Elsie77 in reply toSueJohnson

The use of gabapentin for restless legs syndrome (RLS) is off-label.Initial dose: 300 mg if the person is under 65 years old and 100 mg if the person is over 65 years old. Titration: maximum recommended dose for RLS is 2700 mg. CKS did not identify any specific guidance on dose titration for use in RLS. However, for other indications it is recommended that gabapentin therapy is initiated at 300 mg once daily on day one, twice daily on day two, and three times daily on day three, followed by further increases in 300 mg/day increments every 2–3 days to the maximum dose if required [ABPI, 2020e]. link opened.

SueJohnson profile image
SueJohnson in reply toElsie77

It says 3 times a day for other indications - ie not for RLS. Gabapentin is used for pain and that is one of the other indications where 3 times a day can apply. So that can be ignored. And the Mayo Clinic Updated Algorithm on RLS says the usual effective dose is 1200 to 1800 mg and the maximum dose is 3600 mg which of course would be hard to do in divided doses of 600 mg as advised in which case one would want to switch to pregabalin which can be taken in one dose. And I don't know where your doctor found that "we may find that a three times per day doses may suppress this so that the evening dose is more effective" I have never heard of this and quite frankly don't believe it.

ChrisColumbus profile image
ChrisColumbus in reply toSueJohnson

I find it interesting that while Mayo gives a 3600mg daily maximum for RLS, NICE quotes 2700mg for RLS and 3600mg for neuropathic pain.

As you say, reaching 3600mg on the Mayo 600mg divided dose regime would be difficult, hence the pregabalin recommendation. NICE doesn't mention the 600mg+ difficulty, suggesting up to 3x1200mg.

NICE guidelines need updating in many areas, and I believe RLS-UK are working on this in relevant areas. I suspect getting NICE to change is a bureaucratic nightmare!

SueJohnson profile image
SueJohnson in reply toElsie77

If you can't increase the dose because of the side effects, I would try switching to pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. So 1200 mg gabapentin is 200 mg pregabalin. After a couple days you could try increasing the dose by 25 mg to see if you have the same side effects. If not, and that still doesn't control your RLS, continue increasing it by 25 mg every couple of days.

Elsie77 profile image
Elsie77

My doctor won’t admit that his knowledge is limited re RLS, I need lots of facts to persuade him to change me to pregabalin. How long does GABA remain in the blood supply? Surely the daytime dose is irrelevant if I don’t have any symptoms of rls in the day?

SueJohnson profile image
SueJohnson in reply toElsie77

It is detectable in a blood test for 5 to 7 hours, however the peak plasma level is 2 hours according to the Mayo Clinic Updated Algorithm on RLS. To convince your doctor, print out the relevant sections in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

Yes the daytime dose is irrelevant.

Elsie77 profile image
Elsie77 in reply toSueJohnson

My Dr thinks anything that wasn’t printed in the Uk is irrelevant to Uk health service, wouldn’t even read the mayo information I gave him before.

SueJohnson profile image
SueJohnson in reply toElsie77

Unfortunately I have heard that from others. Maybe you need to change doctors.

Elsie77 profile image
Elsie77 in reply toSueJohnson

That is not very easy, there are fewer medical centres and most that are open are suffering from a shortage of Drs. To complicate things further I live in a rural area so my choice is even more limited. All I can do is to continually challenge his views and feed up to date facts to him.

Elsie77 profile image
Elsie77 in reply toSueJohnson

An update Sue, this is the reply for my request to move onto Pregabalin “ the dose was always designed to be spread out when the medication was designed. Can happily consider pregabalin but you will need to titrate of gabapentin and then we will need to titrate up with pregabalin??“

The dose referred to at the beginning is the dose of Gabapentin, in reply I sent him an extract from the Specialist Pharmacy service for the Uk NHS, which states that a direct swap can be made after dividing dose by 6. I have just got a new prescription for Gabapentin so I’m trialing an increase of 100mg on my 9.00pm dose.

Bananie123 profile image
Bananie123

I have rls 24/7 and it wakes me up each morning. I have always had to take 300mgs of gabapentin on waking, otherwise my day would be unbearable. I then take 300mg at about 5pm to make sitting in the evening possible and 600mg at about 10pm to last through the night. If, on rare occasions, the rls wakes me in the early hours, I just take another tablet. Keeping the gabapentin in my system has been effective for me for over 10 years.

Elsie77 profile image
Elsie77 in reply toBananie123

That seems more sensible than what my dr wants me to do, If I took 900mg 3 times a day I think I’d be a quivering wreck. I will try your regime thanks.

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