Rotigotine

[Betley]

Hi new the site and desperate. Had rls for number of years. Had gabapentin and ropinarole at mo. Taking up to 4 mg a night without any relief. Have been told about rotigotine and wondered if anyone has tried it. I'm at my wit's end😩. Thanks in advance

[Hidden]

Welcome! I’m really sorry that you’re having a tough time. Keep your chin up; you’ll get through this! There is light at the end of the tunnel (a.k.a. A statement I thought’d I’d never say). RLS is Hell with a capital «H» that leads one into the depths of despair. It would not be fair for me to that I understand 100% what you’re going through, but I have a pretty good idea (as does everyone else on this site).

You’ve come to the right place for help.

I’m on the Neupro patch and it seems to work well. It started working within a couple weeks.

Stay strong! ✊

[Joolsg]

Hi and welcome.

When you say you are taking 4mg Ropinirole with no relief can you give us some more details?

What dose did you start on? Did it work initially? Did you then increase dose because it was no longer working?

It’s important to work out if you’re augmenting on Ropinirole because, if so, the Neupro patch, is not a good option for you because you will augment quickly on that.

So, read all the information on the main page of RLS UK website which explains Augmentation.

Then you need to consider your options for other treatments. Again, the website lists other meds used for RLS.

[Betley in reply to Joolsg]

Thank you both for your reply. I started years ago on gabapentin but got to the point where it just wasn't doing anything so doctor switched ropinarole 1mg about 2 years ago and over that period have increased to 4mg. He has just prescribed me 200mg quinine sulphate to take as well. It was a pharmacist that suggest rotigotine so just wondered if anybody else has tried it. I certainly can't continue as I am. I will have a read about augmentation. Thankyou

[Joolsg in reply to Betley]

Quinine sulphate hadn’t been prescribed for RLS for decades. Your doctor is certainly not knowledgeable about RLS so you will have to educate yourself.

As you increased from 2mg to 4mg in a short time period, you should definitely look up Augmentation.

The rotigitone patch will cause Augmentation quickly. I don’t know of anyone who has augmented on a dopamine agonist who has not then quickly augmented on the patch.

Pippins went from a DA to the patch but she has a regular withdrawal regime- She goes through withdrawal every few months. That’s very brave Withdrawal was too hard for me and I couldn’t do it again.

Read up on everything and buy ‘ Clinical Management of RLS ‘ by Doctors Hening, Lee, Buchfuhrer and Allen. You can get it second hand on Amazon. It’s brilliant to educate yourself and show to your GP.

[Betley in reply to Joolsg]

Thanks for your reply. Iam to take the quinine along side ropinarole to see if that helps but don't intend hold out much hope. Will deffo look into the book.

[Pam34 in reply to Betley]

As Jools says it almost certainly won’t help. It sounds like you have augmentation in which case you will have to come off the ropinirole and NOT replace it with another dopamine drug. Read the links below on augmentation-

sleepreviewmag.com/2015/02/...

rls-uk.org/augmentation-reb...

It will be hard but lots of us on here have done it and come through the other side!

[Betley in reply to Pam34]

I've had a read and agree that is probably the problem. U have tried a few times not taking them but it's got that bad I've took some but hasnt really helped. I don't drink or smoke and do yoga . I spend most nights in tears at the moment. Would i need doctors guidance to stop taking them. And what about quinine would i continue that as ive Only been on It a couple of days ?

[Pam34 in reply to Betley]

I can’t tell you to stop taking the quinine, I think you need your doctor to tell you that. All I can suggest is educate yourself as much as you can, read the above links, print them off and show your doctor. Try and get him on side and make a plan in reducing the ropinirole very very slowly. It’s hard but it can be done.

When you get back to base level you can then decide your next steps. Let us know how you get on.

Pam

[Parminter]

4mg of Ropinirole, if that is what you mean, is too much.

Search this site, and the web, for 'augmentation and RLS' and 'dopamine agonists and augmentation'.

And, if your ferritin levels have not been tested, search for 'Ferritin and RLS'.

Doctors are not well-versed in this condition, so you need to do it yourself.

It is daunting, but ultimately empowering.

[DicCarlson]

Here's an article on quinine safety, probably not effective and possibly dangerous...

dailymail.co.uk/health/arti...

[Betley]

Thankyou everyone. I really appreciate it. Can I just say I also have a problem with my back and take dihydrocodeine and also sertraline could these be affecting it. I used to have it maybe 3 or 4 nights but now every night is a nightmare. And it used to be my legs but now seems to be my feet

[Betley]

Well last night I decided to try foot wrapping much to the despair of my sister who said I would wake up with black feet due to lack of circulation!! WOW although probably risky what a difference!!. I just used crepe bandages and my feet tightly. Although not 100% certainly made a difference. Has anybody else tried this ??