Sleep please.

[pilateskid]

Doctor has taken me off pramipexele, not sure that's how you spell it....any way taken me off it , now on patches and having a hell of a night ....went to bed 10.30pm couldn't get to sleep, legs giving me hell and I've got dreadful wind....sorry to much info! Just desperate for sleep.

[Hidden]

Hi sorry to hear of your plight.

I always get this little reaction when someone says "the doctors - - - done something" of anger.

It may be the way you've written it but I think quite a few people might identify with the situation where a doctor has "decided" something for them, without discussion, as if they were the sole judge of what's best for us. OK, so they're experts in medicine. Well perhaps GPs (primary doctors) aren't necessarily an expert in any particular disease condition except minor ones. "Specialists" are expert in their particular field, but even then ALL of them should recognise that decisions made about treatment should be joint decisions, i.e. made jointly by doctor and patient. I particularly get annoyed when doctors "instruct" us to do something without offering sufficient explanation. I really hate it when they're wrong!

Sorry about that bit of a rant, but in your case it begs the questions

Why has the doctor taken you off Pramipexole?

and

Why are you now on the patches?

Presumably, Neupro?

Nonetheless, I appreciate that you are now in this position where the medication isn't working.

This may be because the dose is too low. I read that the starting dose is 1mg a day building up to 3mg a day. What dose are you on?

I've no experience of Neupro personally, others on this site might say that 3mg is too much.

Maybe it's because Neupro, i.e. Rotigotine, is a Dopamine Agonist, the same as Pramipexole.

I can only suggest that you go back to your doctor and say the patch isn't working and discuss the dose, why they stopped the Pramipexole and why the patches.

Apologies, if it isn't Neupro patches you mean but something else. My comments are largely irrelevant.

However, even so -

It may not be true that as you get older you get wiser. I'm discovering as I age, the more I realise what I DON'T know. I have learned, however, that when a doctor prescribes a treatment they should explain the benefits, risks - and alternatives. If they don't do this, I ask.

According to laws of "Informed consent" they are supposed to so they can't deny you this information.

[pilateskid in reply to Hidden]

Pramipexele wasn't working for me anymore and I asked the doctor about patches. The young doctor has looked into rsl as he said he would. I've just started yesterday with the patches so will give it time ....on 1mg, have to go back and see him in a month.

[Hidden in reply to pilateskid]

Pilateskid i would advise you to read the pinned post about Augmentation, see if that relates to you with the Pramipexole not working anymore. The patch should have giving you some relief straight away, and full benefit after being on for the 24 hrs. It maybe that you do need to go higher with the patch , 3mgs is the highest dose to take for RLS. But i am wondering if you did actually augment on the Pramipexole.

[Hidden in reply to pilateskid]

Well that sounds better, it tends to be older doctors that "instruct" you.

It's good that your young doctor has looked up RLS, but that's not entirely reassuring because you don't know exactly what they found.

As Elisse says, if the Pramipexole stopped working, maybe you'd augmented or at least started to. Did the doctor discuss augmentation with you?

According to the UK national guidelines for treating RLS if a doctor prescribes a Dopamine Agonist (DA) for RLS, they are supposed to make you aware of the possibility of 3 things

1. Loss of efficacy. (the DA might stop working)

2 Impulse Control Disorder (the DA might cause this)

3. Augmentation (the DA might cause this.

Pramipexole is a DA and the doctor that prescribed it to you, should have warned you of these 3 things.

If your young doctor has looked up RLS then they should have looked up the national guidelines, and followed them.

Neupro, i.e. Rotigotine is a DA so the doctor should once again have warned you of these three things.

Here is a link to the guidelines. It might useful to show them to your doctor.

cks.nice.org.uk/restless-le...

In the meantime, if you did augment on Pramipexole, then it's possible you're now augmenting on Neupro, they are both DAs.

If you're not, but need a higher dose, a month is a long time to wait for an increase.

It might be in your interest to look at the pinned post on augmentation as Elisse suggests, look at the NICE guidelines and contact your doctor to bring your appointment forward.

I'm afraid that when you suffer RLS, you have to become your own expert on it. GPs especially rarely know much about it, they're certainly not experts.