Gabapentin advice: I’ve been prescribed... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin advice

lee_uk profile image
12 Replies

I’ve been prescribed 300mg of Gaba, switching from 300mg Pregabalin. I realise this is not a comparable amount, but try telling my doctor that! Needless to say 300mg didn’t do anything and I did suffer withdrawal symptoms. As the tablets come in 100mg I’ve been increasing every day up to 600mg for past few days. Still not having any effect. Do I continue increasing until 900mg or keep on 600mg for a bit longer? I take the 600mg in one dose 2hrs before bedtime.

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LotteM profile image
LotteM

Giving you some things to consider, that are helpful, I hope.

First, gabapentin get less well absorbed than pregabalin and gets absorbed less well with increasing doses. This, it is difficult to compare the 300mg pregabalin to a gabapentin dose. However, 300mg pregabalin is a relatively high dose, whereas 300mg and even 600mg are still relatively low doses of gabapentin.

Due to this absorption issue, it is generally advisable to switch to pregabalin when you reach doses of gabapentin of 900-1200 mg. That said, in the studies it has been found that doses of 1800mg and as high as 3600mg of gabapentin have been found effective for some individuals.

To increase absorption, if you want to increase your gabapentin dose, do so by splitting the dose, part early evening, part later evening.

You may want to consider to increase a bit further, but not too quickly, and see whether the gabapentin starts to work (better) while side-effects remain absent it manageable.

Finally, you have to jump through the hoops. If you can show that you have seriously tried the alpha2delta ligands pregabalin and gabapentin, and they didn't work for you, then you have a strong case to get prescribed an opioid. Not that an opioid os necessarily a good thing, but they have been proven very effective for severe and refractory RLS, doses for RLS are low, opioids have a long history in medicine and (side)effects are well known and there are various types that differ in composition and thus effect and especially side effects. The main trouble is getting one prescribed and getting good help with it.

For now, you are stuck with te gabapentin. I do hope it starts to work for you soon.

lee_uk profile image
lee_uk in reply toLotteM

Thank you for your kind advice. I’ll try upping it a bit (slowly) and spreading the dose through the evening.

OMG

Pregabalin is six times as strong as gabapentin. Therefore to switch from 300mg of pregabalin to an "equivalent" dose of gabapentin you would need 1800mg. Your doctor prescribed 1/6 of this and I'm surprised you don't have withdrawal symptoms.

Given what Lotte's written, I can't imagine why your doctor's switched you from pregabalin to gabapentin, what was the reason?

Pragmatically, it's usual to keep increasing the dose of gabapentin until you achieve a dose that works. Who knows what that will be?

You're also in a dilemma, since I would imagine your doctor is only giving you a prescription for a limited amount of gabapentin. If you keep increasing the dose, you will more quickly run out of capsules. You'd then need to get another prescription.

My suggestion is, go and see another doctor. If 300mg of pregabalin didn't work then it's likely even 1800mg of gabapentin won't. An opioid may be a better option.

lee_uk profile image
lee_uk in reply to

Thank you Manerva. It’s not been a pleasant experience so far. Pregabalin wasn’t working, although compare to my current situation it was certainly better. Unfortunately in this area Doctors are not taking on new patients and I’m limited living in a village. If anyone knows a private neurologist in Bedfordshire area I’d be very grateful.

in reply tolee_uk

Usually, as Lottte said, it's the other way round. If gabapentin isn't working then you switch from gabapentin to pregabalin as it's more potent and more easily absorbed, hence more effective.

It's unfortunate that your doctor doesn't appear to know this or know about equivalent doses.

You could try showing him/her this information

surreyandsussex.nhs.uk/wp-c...

The other thing is that you fit the criteria for referral to a NHS neurologist. Unfortunately, this could mean quite a wait. I'm at the wrong end of the country to help with a private one.

lee_uk profile image
lee_uk in reply to

Great find on the study, thank you. I shall go armed with this next week :)

Pamsam profile image
Pamsam

Take them through the day, I take 3 a day 300mg, takes the edge off it.

Berteau profile image
Berteau

I have been on gabapentin (G) and pramipexole (P) since 2012. I have RLS and periferal neuropathy. I believe I started with 4/ 300 mg G and 3/0.5 mg P. The P is a Parkinson's med for spasms. Once in a while , I get a jump from my left arm. Both meds promute compulsive behaviors and coupled with CPAP sleep issues I gained about 50 lbs. Fortunately I do not have a compusive urge to gamble. The maximum dose of G is 12/300 mg/day. I take 5/day of P. I try to space them out to maintain a body level ( 1 at 8am, 2 at 5pm and 2 at 9pm). I did not know that I was actually aiding the absorption- thanks LotteM! If I forget the 2G and 2P at 9pm, it will be a bad night. When I get overtired from poor sleep and a strenuous day, a nap helps reduce some of my jumping feet symptoms to a level the pills can deal with. I am 74 and not diabetic.

Best Wishes

LotteM profile image
LotteM in reply toBerteau

Hi Berteau, the disjunct dosing applies specifically to gabapentin and only at higher doses (>600mg). For RLS, medicines are usually only taken in the evening, as RLS is mostly an evening/nighttime disease.

You take quite a bit of pramipexole, far more than the now recommended maximum for RLS(2 tablets I think, not sure) which is lower than the maximum mentioned in the information leaflet (6 tablets). Also, if you are experiencing daytime RLS symptoms as well as RLS in other body parts than your legs, it is very likely that you are experiencing augmentation. This is a paradoxical worsening of symptoms due to the pramipexole (or another dopamine agonist DA). If so, it would be wise to inform yourself thoroughly about augmentation (use the search function, but also check put rls-uk.org and rls.org), discuss with your doctor and them start reducing the pramipexole. When you reduce, do it very slowly, as that generally reduced the withdrawal effects.

I am afraid you've got work to do.

in reply toBerteau

Just to second what Lotte says really.

Firstly pramipexole (P) is used for parkinson's disease (PD) , it's true. However, it's also specifically used for RLS.

The difference is that the dose of P used for PD is higher.

The maximum dose for RLS is officially 0.75 and it appears you were prescribed twice that, i.e. 1.5mg and it was further increased to 2.5mg.

Whoever prescribed you that dose is irresponsible. Not only because it is an excessive dose, but also it would have been almost inevitable that you would suffer augmentation as a result. It's clear that you do have augmentation.

This is indicated by you spacing the tablets out through the day, presumably because you get symptoms throughout the day.

It's also unlikely that the gabapentin will be helping you. Any effect of the gabapentin will be wiped out by the augmentation.

I'm afraid I agree with Lotte. You have some work to do.

First you need to inform yourself about augmentation.

It seems you may also need to educate whoever prescribed you this ridiculous amount of P.

Then you will have to plan how to wean yourself off the P. This will relieve the augmentation and if successful will improve your quality of life dramatically.

You should avoud making any sudden or dramatic reductions in the amount of P you take. This can lead to severe withdrawal effects. Especially as you say you have an Impulse Control Disorder.

I suggest you don't make anyvreductions until you're clear how to do this safely.

I note you say sometimes you miss out 2 tablets. At 0.5mg each this is a massive reduction of 1g which is more than I ever took and more than the maximum.

I'm very sorry you've found yourself in this situation apparently without you realising what's gotten you into it and apparently without realising it could have been prevented. It appears to be due to the negligence of whoever wrongly prescribed these medicines.

Berteau profile image
Berteau in reply toBerteau

Thank you. I never heard the tem augmentation until I joined this site. My feet and ankles bother me all day, but are worse in the evening and can make it hard to get to sleep. The other twitches or stinging sesations are sporatic. I will pass any information from LotteM, Manerva, and any other new and helpful information on to my primary care physician. Yes, I have work to do!

Brandon703 profile image
Brandon703

I take Gabapentin 300 3 times a day. I believe it has somewhat lessened my RLS but I am still taking Ropinerole.

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