I'm a little confused ! : As I have... - Restless Legs Syn...

Restless Legs Syndrome

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I'm a little confused !

Coopersmum profile image
13 Replies

As I have said the Neurologist has told my doctor to prescribe 50 mg Pregabalin to take whilst I start the withdrawal from Ropinerole. I have been doing so for two days now, as I have just started reducing Ropinerole at .25 mg. Is this correct ? as the advice I have been given on the forum is to start Pregabalin about 3 - 4 weeks before you come off Ropinerole altogether ? the same is stated in the withdrawal schedule on RLS-UK. I am on day 2 of withdrawal and I have slept really well, for me and had hardly any restless leg problems.

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Coopersmum
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13 Replies
SueJohnson profile image
SueJohnson

Yes it is correct and that's great that you have slept well and hardly had any restless leg problems.

Coopersmum profile image
Coopersmum in reply toSueJohnson

Thank you for putting my mind at rest Sue. I hope this continues for a little while anyway 🙏

Joolsg profile image
Joolsg

I'm a little confused. Have you just dropped 0.25mg OR have you completely Stopped it? If you've just dropped 0.25mg, you may not experience withdrawals.

I was absolutely fine until the last 1mg, then it became brutal.

What dose of Ropinirole are you now taking?

Coopersmum profile image
Coopersmum in reply toJoolsg

Yes ,I have just had my first reduction of Ropinerol. So I am just at the beginning of the process. I wasn't sure if I should be taking Pregabalin at the start. As the information I have seen suggests that you start the Pregabalin 3-4 weeks before you stop Ropinerol altogether.

Coopersmum profile image
Coopersmum in reply toCoopersmum

I'm currently taking 2.75mg.

Joolsg profile image
Joolsg in reply toCoopersmum

Ah ok. It is slightly too soon to start pregabalin because it doesn't really help withdrawals and you have around 22 weeks of reduction ahead of you.It's best to start pregabalin around a month before the last dose of Ropinirole.

Coopersmum profile image
Coopersmum in reply toJoolsg

Sue replied and said it was fine! What should I do ?

Joolsg profile image
Joolsg in reply toCoopersmum

I suspect SueJohnson thought initially that you were off Ropinirole completely.The general advice on here and on RLSUK is to start pregabalin around a month before you drop the last dose.

You have only just started to reduce and have 22 weeks still to go.

Coopersmum profile image
Coopersmum in reply toJoolsg

Ah I see, I will need to speak to my GP as this is what the Neurologist has told her to do. Thank you for clarifying this for me.

Joolsg profile image
Joolsg in reply toCoopersmum

You can stay on the 50mg for now, but don't increase to 100mg until 4 weeks before the last dose. Most neurologists mistakenly believe pregabalin will avoid all withdrawal symptoms. It will not.The severe RLS symptoms of augmentation override pregabalin.

UK neurologists also don't realise that withdrawal should be very slow, over months rather than weeks.

Coopersmum profile image
Coopersmum in reply toJoolsg

Thanks Joolsg, I understand and perhaps that is what's happened. I am expecting a call from my GP on Tuesday, so I will discuss this with her then

SueJohnson profile image
SueJohnson in reply toCoopersmum

I was confused - pun intended - and thought you meant is it correct to start it 3 to 4 weeks before you are off it.

Coopersmum profile image
Coopersmum in reply toSueJohnson

I think I am sufficiently confused for both of us. On reflection perhaps I didn't explain in very well.

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