Hello

[Cataanddogs]

I've just seen my neurologist and all he said put my gabapentin up not a lot of help really.

[ChrisColumbus]

As you've been advised previously, unfortunately - for all of us - very few UK doctors or neurologists know much - if anything - about RLS.

How long were you on ropinirole and how much were you taking? When did you stop taking it?

How long have you been taking gabapentin? What dose of gabapentin have you been prescribed and how are you taking it: i.e. are you taking it in one dose, or split over the day, what time(s) of day...?

What *other* medications are you taking, for anything, as many can trigger or exacerbate RLS? If you list, people here can advise.

You may have provided this info before, but it would be good to have an update.

[Cataanddogs in reply to ChrisColumbus]

I've been on them for years 20 years I take 3 2mg of ropineral and 900mg of gabapentin

[ChrisColumbus in reply to Cataanddogs]

See Sue and Jools responses about the need to wean off ropinirole before gabapentin will work properly and about how to time taking gabapentin

[Joolsg in reply to Cataanddogs]

3 doses of 2mg Ropinirole??That is way above the maximum allowed dose and the reason you are suffering so terribly.

You will NEVER stop your suffering until you follow the advice on here and on RLS-UK website.

Please, please find a new neurologist asap.

And speak to a lawyer.

[SueJohnson in reply to Cataanddogs]

The gabapentin won't help you until you are off ropinirole and your withdrawal symptoms have settled.

[SueJohnson]

Are you taking your gabapentin correctly?

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.

Is it helping? How much are you taking?

[Joolsg]

I presume you followed our previous advice and that you are completely off Ropinirole (and any other dopamine agonist)?You can never get relief from drug-induced worsening until you taper off Ropinirole.

If you are completely off Ropinirole, what dose of gabapentin are you now on and how are you taking it?

Unfortunately, your doctors will be reluctant/unable to prescribe opioids because of the previous alcohol issues.

Out of interest. Did you always have issues with alcohol?

Ropinirole can cause compulsive/addictive behaviour and drinking might have been caused by the Ropinirole.

[Cataanddogs in reply to Joolsg]

He will not take me of them o asked him if I can have different meds he said no.

[Joolsg in reply to Cataanddogs]

What??A neurologist has refused to take you off Ropinirole when you have CLEAR augmentation???

That is medical negligence.

You need to change neurologist as a matter of URGENCY.

You need to file a formal complaint to the General Medical Council attaching a copy of NICE guidance and RLS-UK website.

AND you should consult a lawyer.

I'll message you with details.

You will NEVER be free of severe RLS in your legs and arms until you get off Ropinirole.

[SueJohnson in reply to Cataanddogs]

As Joolsg said that is medical negligence !!!

But you don't need his permission. You can come off them it by yourself using the advice I gave you.

And you do need a new neurologist. If you tell me what city you live in I may be able to give you the name of a knowledgeable doctor.

[Cataanddogs in reply to Joolsg]

I haven't had a drink for 8 years

[ChrisColumbus]

Guidance from NICE on augmentation after being on a dopamine agonist such as ropinirole which should be followed by all UK doctors:

"If apparent augmentation develops:

Measure the person's serum ferritin. If the concentration is less than 50 to 75 micrograms/mL, investigate potential causes of iron deficiency anaemia and if appropriate offer oral iron supplements.

Ask the person about any lifestyle factors (such as sleep deprivation, alcohol use, decreased mobility) or recent medicine use (such as dopamine antagonists, antihistamines, or antidepressants), in addition to any recent opioid discontinuation or blood loss that could cause symptoms mimicking augmentation.

If there are no apparent exacerbating factors, and symptoms are severe, stop the causative drug. An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand, but it is recommended that you seek specialist advice in this situation."

[Marzipana]

Hello Cataanddogs! I'm not surprised (but I'm sorry) you're not having positive results with Gabapentin. Gabapentin seems to be the "go-to" drug neurologists start with. I was recently up to 2100 mg nightly, and I was still up walking several times a night. My Neurologist is at the Mayo Clinic in Rochester, so in a sense, I'm dealing with the "Big Guns". He was disappointed that Gabapentin didn't work. Now I'm on 10mg. of Oxycodone nightly (as of less than a week ago). I've had a couple of good nights, but I also happened to be exhausted from lack of sleep, so we'll see how it goes in the next week. Blessings go on your RLS Journey!!