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.
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.
Thanks Sue, much appreciated as always!
Have you checked all possible triggers?
Yes, as far as I can tell.
It’s been pretty consistent like this for 5 years.
Antihistamines, antidepressants, hrt meds ,statins?Keeping an intake diary to pinpoint food or drink?
Sue, do I ask for the 300mg in one dose? Is there anywhere that has the dosage guidance?
Since you may want to increase it ask for a prescription for both 300 mg and 25 mg. Https://mayoclinicproceedings.org/a... This is the bible on RLS.
Great thank you, that’s a great idea as I have to go through a real rigmarole to get anything.
Is it just one dose in evening? Appreciate your help again!
Yes 1 to 2 hours before bedtime.
Fab, thank you.
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.
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!
If red listed, you can only get it via a neurologist. They can write a prescription on a green form OR write to your GP recommending they prescribe it on the NHS. But, your GP surgery may still refuse. That happened to HipHop72 and his neurologist arranges a green prescription form which he has to collect monthly.Postcode lottery.
Ok thank you. I’m on the waiting list to see a neurologist (76 week wait, yay)
I’ll keep that in mind for when I get my appointment.
NHS rules state that you can choose your hospital so you can find one with a shorter waiting list anywhere in the country. Have a look at the website 'My Planned Care' - it's very helpful.
Just had a look, doesn’t apply in Scotland unfortunately. But thank you 😊
There is Dr Colin 0'Leary in Glasgow that Scottie99 saw. I have no idea how satisfied he was nor if he is a neurologist nor if he would prescribe buprenorphine but you can message him and ask.
Great, thank you!
change over to Pregabalin from Gabapentin
Gabapentin to pregabalin 
From Gabapentin to Pregabalin 
Gabapentin or Pregabalin
