JoeR. Coming of Pramipexole and codei... - Restless Legs Syn...

Restless Legs Syndrome

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JoeR. Coming of Pramipexole and codeine. Thanks to all and especially Madlegs1, Joolsg and Elffindoe

JoeR profile image
JoeR
6 Replies

Thanks for the swift replies, at least I am not going mad. Just to clarify I was on one tablet of Pramipexole 0.52mg at night and 2x30mg of codeine. The consultant neurologist gave me 7x0.26mg pramipexole to be take 1 a night for 7 nights and then go on the Gabapentin 300mg. To start the Gabapentin: 1 tablet for 2 nights, 2 tablets for 2 nights and the 3x300mg tablets. I stopped the codeine when I stopped the Pramipexole. JoeR

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Elffindoe profile image
Elffindoe

0.26mg of pramipexole appears to be the extended release (ER) version.

The immediate release (IR) version is 0.125mg or 0.25mg.

The maximum dose of the IR version is 0.75mg.

The dose suggested by your Dr is in excess of this maximum.

It also seems to be in excess of the dose you were previously taking if I've understood correctlybwas 0.52mg.

It in fact 250% more!

How is this even logical?

It then appears the Dr is suggested you stop the pramipexole cold turkey.

If this is this case he is in my opinion incompetent.

He also appears he suggested you also stopped the codeine 60mg cold turkey too. This, in my opinion is doubly incompetent.

I'm sure you're not going mad. I quite believe that Drs can give dangerous advice based on profound ignorance. There are plenty of examples of this in the forum.

I suggest you consider the information we have given you and make your own decisions.

I think you have no reason to doubt your sanity, it's this doctor who has put you in this terrible situation.

Good luck.

Madlegs1 profile image
Madlegs1 in reply toElffindoe

Agree.

LotteM profile image
LotteM

I think the 7x0.26mg pramipexole for 7 nights means to take ONE 0.26 mg of pramipexole a night for 7 consecutive nights. This means halving Joe's previous dosis. That doesn't seem wise either, as that may induced withdrawal.

Also, Joe, are these extended release (ER) tablets of immediate release ones. The ER tablet are not suitable for halving but the immediate release are. That is important when you want to slowly reduce your dose.

If you take the 0.26 mg tablets and then stop after 7 days, this is from our collective experience a far too large reduction to be taken. It would be better if you would be prescribed 0.125mg tablet and take 2 of these to start with (or even more, as you were on a higher dose - correct?). And only reduce by half a tablet. So, if you start with 2 tablets, reduce to 1.5 tablets. Additionally, usually it takes several weeks for gabapentin to become effective. So you should start the gabapentin 3-4 weeks before reducing your Pramipexole. And the dose of gabapentin should be sufficient; usually that is at least 600mg (in the evening) , but more often 900-1200mg, and then taken partly early in the evening and partly later in the evening.

The reduction in pramipexole (relative to your current or earlier dose) will most likely temporarily increase symptoms. And you may need for example codeine or a low dose of oxycodon to deal with it. I think this is all described in te NICE guidelines. So makes sure you are very knowledgeable about the advises of NICE or the RLS experts before you change your current treatment.

Elffindoe profile image
Elffindoe in reply toLotteM

Good point, 7 tabs, one a night. But then cold turkey!

Unfortunately, the NICE guidelines make no mention of weaning off pramipexole and absolutely no mention of oxycodone.

In fact I haven't ever come across any "official" guidelines for weaning off a DA.That'spoosibly why Drs are so ignorant.

There are however ample warnings about stopping cold turkey!

The guidelines are for GPs only. If the DAs and gabapentinoids fail fail the guidelines say refer the patient to a neurologist.

The NICE British National Formulary (BNF) does demonstrate that oxycodone is licensed for use for "Second-line treatment of symptomatic severe to very severe idiopathic restless legs syndrome after failure of dopaminergic therapy"

Joe see this link

bnf.nice.org.uk/drug/oxycod...

Joolsg profile image
Joolsg

So he has halved your dose overnight and then asked you to go cold turkey after the 7 days supply is up. Dreadful advice but tbf GPs know zero and the guidelines aren't helpful.However, those of us who've been on DAs know what hell withdrawal is.

You've been thrown into withdrawal without the codeine to help.

If your GP won't listen, look for an addiction clinic nearby and let them know getting off Pramipexole is harder than getting off heroin.

Also look up DAWS. Very real!

SueJohnson profile image
SueJohnson

You have more important things right now, but on the gabapentin if you take more than 600 mg (and you mentioned you are currently taking 900 mg) but less than 1300 mg, take 600 mg 2 hours before bedtime and the difference 4 hours before bedtime. If you take 1300 mg but less than 1900 mg take 600 mg 2 hours before bedtime, then 600 mg 4 hours before bedtime and the difference 6 hours before bedtime. The reason is than the absorption is less if you take more than 600 mg.

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