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[Hooc]

Just seen my neurologist today and switched me from Pramipexole to Ropinirloe .25mg starter pack one tablet Forrest two days then two tablets per day. My left leg is twitching uncontrollably can't do anything about it driving me nuts. Tried a Zopiclone 7.5mg to no avail trying to massage the leg but not working can't take anymore so tired but have to keep walking up and up and down it's torture!

[Hidden]

Why were you switched from the pramipexole to Ropinerole. ? Were you augmenting on the Pramipexole. ? What dose was the Pramipexole that you were taking ? If you were augmenting on the Pramipexole then the Ropinerole will not help. Zoplicone is a sleep med so will not help while your RLS is going nuts. Have you any pain meds in the house anything with codeine which might help you.

[Joolsg]

Oh Hooc,

if you read the replies to your post 3 months ago, they tell you everything you need to know.

You seem to be in augmentation & your GP has admitted he's clueless about RLS by saying he has never heard of it and then trying to increase your dose of prami.

It had stopped working for you and you were really suffering. Connie told you most neurologists know nothing about RLS & she's right as the one you have seen has started you on another dopamine agonist when you were augmenting on pramipexole. You will find yourself augmenting on ropinirole very quickly as it's the same class of drug.

If you have any codeine in the house- take it. Go to a chemist tomorrow and buy Solpadeine Max - it has codeine in it and doesn't require a prescription. See your GP on Monday & this time, take a print off of all the articles/links Kaarina posted for you 3 months ago. Expalin how badly the RLS is and how another DA won't help.

Until you get off Dopamine Agonists, you will continue to get very little sleep & have terrible RLS.

[Hooc in reply to Joolsg]

Oh Dear I am at loss to know what to do or where to turn my daughter came with me and we believed every word the neurologist said my earring is v poor so she asked all the questions didn't sleep a wink last night despite paracetamol and Zopiclone. My legs are jerking uncontrollably all the time sleep is impossible. Phoned nhs 111 during night but no one came back to me don't know where to turn will get some codeien when chemist opens. If I don't take ropinerole what do I take? In its place?

[Kaarina Administrator in reply to Hooc]

Here is the link again on Augmentation: sleepreviewmag.com/2015/02/...

Here is a link on Augmentation posted by Pippins2 about a year ago: healthunlocked.com/rlsuk/po...

[Joolsg in reply to Hooc]

Hi Hooc,

Ask your daughter to read all your posts & the replies & get her to print off the information that Kaarina gave to your post 3 months ago.

You are in withdrawal from pramipexole- the neurologist should have realised that would happen as the information leaflet given with the drug sets out what will happen if you stop it suddenly without a slow reduction. The RLS becomes much worse & you will have leg jerks every few seconds.

You must get hold of solpadeine max to help the withdrawal spasms until you can see your GP

The withdrawal from pramipexole & Ropinirole should be done slowly over several weeks and with the help of a strong opioid like tramadol. You will need 100mg a night and 50mg every 4 hours during the night after you take the last dose of pramipexole/ ropinirole. The withdrawal is really hard- you are experiencing that now. No sleep and constant leg jerks.

If you have a camera phone, video your legs during the night when it is bad and show to your GP. They have no idea what withdrawal is like.

Ask your GP for pregabalin once you have managed to get off pramipexole/ropinirole. It is effective for RLS and should be started at 25mg every few days up to 300 mg a night. Some people have to take another drug in combination with pregabalin, like tramadol (50-100mg a night).

I really feel for you Hooc and I am angry that the neurologist left you in this state.

[Steve2777 in reply to Joolsg]

I just can’t believe Ropinirol is still being prescribed! It altered my life forever.

[Joolsg in reply to Steve2777]

I agree Steve. I’ve written to Glaxo Smith Kline who make Ropinirole under the name Adartrel in the UK. I’ve suggested they send out an alert to all doctors and neurologists to warn about the increase in Augmentation & the trauma of withdrawal.

They are ignoring my last letter, presumably because they are wary of legal action.

I may look into a class action against Big Pharma because they know of the Augmentation risk and are still not telling doctors the maximum dose should be 1mg & NEVER to increase the dose if it stops working.

I’m angry at Big Pharma & I’m angry at the lazy doctors who can’t be bothered to do basic research when patients present with increased RLS symptoms.

[involuntarydancer in reply to Joolsg]

Oh wow; a class action. That’s a BRILlIANT idea. I will do any work you like on that.

[Joolsg in reply to involuntarydancer]

I am getting so angry ID at the total ignorance of doctors & neurologists & the lack of care by Big Pharma.

My friend is a journalist who has been running a massive media campaign to get mesh implants for after childbirth & hernia banned. I’m amazed at the success so far- it’s been banned in Australia & debated in Parliament.

I’ll start researching & message you. Long time since I’ve sent a Legal Letter Before Action.

J x

[involuntarydancer in reply to Joolsg]

Welcome back! We should team up!

I reckon these companies are really daunted by potential bad publicity. Wouldn’t it feel good to get the matter into the public domaine?

[Joolsg in reply to involuntarydancer]

OMG let’s sort it!

I’ll message you later and we can talk tactics. Lotte can help on the Science bits.

[involuntarydancer in reply to Joolsg]

Yes, yes and yes again. I’m pretty sure my qualification is still good in England. Once a barrister always a barrister ... or is that rights of way?

[LotteM in reply to Joolsg]

I was just about to write that I’d help in any way I can. I’m not knowledgeable about law (other than the EU Habitats and Birds Directives - of no use here...), but very happy to help with science bits.

Excellent idea, jools! Do we include both ropinirole and pramipexole? And we may have to think about Neupro - or any new or old DA that gets prescribed for RLS.

[Joolsg in reply to LotteM]

Definitely Lotte,

All the dopamine agonists. I have reported Augmentation as a serious side effect on the UK yellow card scheme and I’ll research who to contact/ write to at the British Medical Association and I’ll also research Chief Executive contact numbers for all the pharmaceutical companies making DAs in UK.

Speak soon x

[Hidden]

Hooc, you poor thing, what a useless neuro you saw, and unfortunately some are and have no clue on how to treat RLS and Augmentation, i am really mad at that neuro. I didnt realise you had already posted before about having problems with the Pramipexole. The Solpadine Max only has a small amount of codeine in it. thats why it can be sold OTC, but something is better than non right now,. and it might just help a bit. Like Jools has said you really need Tramadol for those withdrawals, its what most have to take. Do, as Jools has said on Monday , see your doctor, insist you see someone if they say no appointments left. And take all the info along with you. Good luck. please let us know how you are doing, You will get all the support you need on here and advise from those who have more experience and know more than most doctors'.

[Hooc in reply to Hidden]

Elise sorry for not replying sooner I'm still at a loss not thinking clearly staggering from one day to another my gp a nice lady but not much idea in rls going to see a talking therapist tomorrow may help to clear my Mind and get things in perspective I live in north of England and help is scarce on the ground light years behind London I paid a lot of money for positional release therapy for my rls but only short term fix the doc wants me to go for more "top up" treatment but not sure what to do reluctant to keep taking medicine ropinole not doing much I know I have augmentation but docs don't seem to acknowledge the fact and because I'm not thinking clearly finish up doing nothing

[Hidden in reply to Hooc]

Hi Hooc , please dont worry that you havent replied til now. you are sleep deprived and thinking straight doesnt happen when so tired. I dont know what the others think, but i cant see how a talking therapist will help right now. You are SLEEP deprived thats why you cant think straight.! You need sleep my love, then you can think straight. Did you see your doctor by your self, ? can you take someone with you, they can speak up for you when you cant think what you need to ask the doctor. Is there another doctor in your surgery you can see, that might at least listen to you and acknowledge that you need to wean off the ropinerole and you need help with that . Honestly hun, nothing else will work all the time you are augmenting. And its not just doctors in the north of the UK that are not up on how to deal with RLS, the meds and augmentation, it can be world wide , i see it all the time on other RLS groups, and people are from different countries who have useless doctors AND neuro's. Unfortunately its us the patient who has to speak up and tell the doctors what we need. Keep talking to us, let us know whats happening.

[involuntarydancer]

Jools is right: you need to get off the dopamine agonists, which are causing your worsening symptoms, and you need an opioid to do it. Switching from pramipexole to ropinerole is senseless the only thing it does is show how mind-blowingly ifnorant your neurologist is. I can’t believe that he got paid for giving advice like that.

[Trikkinoy]

I would stay away from Ropinirloe and ALL DA's. They will just cause you to augment and the more you take the harder it will be to get off. I am currently weaning myself off from the EXTREME augmentation. I went from 5 pills to a Nepro patch (DA) back to pills to get off ASAP. The only thing that has truly helped me is an opioid.