Is it time to swap from Gabapentin to... - Restless Legs Syn...

Restless Legs Syndrome

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Is it time to swap from Gabapentin to Pregabalin?

Islay9 profile image
8 Replies

I’m up to 1800mg (6pm/8pm/10pm) of gabapentin now with one 30mg dihydrocodeine.

Waking 3 times a night and now sometimes needing a second dihydrocodeine as the legs are bad.

Wondering what are my best next steps. Im thinking Pregabalin. I know you get the equivalent dose but would you ask for the same or one up from this next? (ie equivalent of 2100mg?)

Or something else?

Thanks all, feeling pretty disheartened after thinking I’d cracked it.

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Islay9 profile image
Islay9
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8 Replies
SueJohnson profile image
SueJohnson

I would first switch to 300 mg and give it a few days to see if you have any side effects you can't live with. Then increase it by 25 mg which is the equivalent of 1950 gabapentin and see if that works.

Islay9 profile image
Islay9 in reply to SueJohnson

Thanks Sue, much appreciated as always!

Madlegs1 profile image
Madlegs1 in reply to Islay9

Have you checked all possible triggers?

Islay9 profile image
Islay9 in reply to Madlegs1

Yes, as far as I can tell.

It’s been pretty consistent like this for 5 years.

Madlegs1 profile image
Madlegs1 in reply to Islay9

Antihistamines, antidepressants, hrt meds ,statins?Keeping an intake diary to pinpoint food or drink?

Islay9 profile image
Islay9 in reply to Madlegs1

No to all of the above (I’ve studied the list of what not to take) except HRT which I have increased/decreased/altered with no change. The legs/insomnia started a year before taking HRT and haven’t changed since no matter what I do.

Joolsg profile image
Joolsg

Bear in mind that gabapentinoids often do not work for RLS patients, particularly when they have augmented on a dopamine agonist. The experts talk about this.I was on 25mg Oxycontin and 150mg pregabalin for 5 years. I still had very severe RLS and was woken 3 times a night.

Professor Chaudhuri told me there was nothing else he could do and 4 hour's broken sleep was the best I could expect.

Luckily, Shumbah was in exactly the same situation and she was prescribed Buprenorphine which worked 100% the first night.

It took me a year to work up the courage to try it and another 6 months to persuade Professor Chaudhuri to agree to it. But, he did eventually send an email to say he had 'no objections if my GP agreed to prescribe it'.

You may well be in the same situation. The gabapentinoids may not work at all.

If switching to pregabalin doesn't work, ask for low dose buprenorphine or methadone.

There are several UK patients now takung them for refractory RLS.

Islay9 profile image
Islay9 in reply to Joolsg

I’ve never taken a DA (thankfully) The only thing that has made a difference in 5 years is dihydrocodeine which I had after surgery earlier in the year. I had already started the gaba so continued with both and increased the gaba in the hope that would make the difference.

Part of me wants to stop the gaba and just take the D to see if that makes a difference but I know it will take a while to come off it so thought I should see it through first.

Unfortunately buprenorphine is red listed in my area (Grampian, Scotland) so does this mean I can’t get it at all? Can I get it on private prescription via a private consultant?

Thanks!

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