Ropinirole

[Mikki01]

I have managed to get through my 1st night on a further reduction now from 8. 0.25 I have got to 4. 0.25, for some reason it made me very sleepy I assume it's a withdrawal side effect, the pills knock me out anyway but the reduction has ten fold. Not complaining as I slept and I cannot believe I have managed my 1st night on just 4 0.25 after years of 2mgs.

I have just been I formed that my doctor has referred me to walton clinic for a second referral as urgent due to my muscle spasms not my rls which is hilarious because it's due to the ropinirole which I only now know due to this forum.

Apologies lots of information to take in so I'm sorry to ask again what dose do I need to get to before I start a new medication.

1. What med can I use to help me wean off

2. What med should I ask for to try firstly

Or meds.

I know one might work for one but not the other so a list of what I can keep trying if one fails.

Cannot see me going cold turkey at all but I will reduce to what I can I'm not sure I can passed 4, 0.25 without someone meds to help me wean off so advice on that also.

This clinic I've been referred to has a big neurological department but guess what none have RLS in thier profile so I want to go in armed and will send all the links to them before I go.

On a positive side my leg spasms have decreased! Still got them but omg my skin was crawling a few weeks ago and my muscles visable pulsating. Still having bouts but it's clear to see it's the ropinirole.

They have refused me an iorn infusion as my last ferrin was 140 even though it's been well under 100 for years. So I'm now on 200 x 2 ferrtin sulfate and hope to ger it a bit higher also on vit d as that was also very low.

Thanks again

[ChrisColumbus]

Firstly, well done on reducing as far as you have to date. I assume you're following Joolsg and/or SueJohnson's advice on how to withdraw very slowly?

You have probably been referred to RLS-UK's Dopamine Agonist Withdrawal Schedule in previous replies but here are a couple of extracts:

1. On helping withdrawal from ropinirole:

"Patients have reported on the RLS-UK help forum that using methadone or buprenorphine while withdrawing from a DA can completely eliminate DA withdrawal symptoms.

Both methadone and buprenorphine are difficult to obtain in the UK because there have been no UK trials for RLS and most doctors are unfamiliar with prescribing them for RLS. Buprenorphine is ‘red listed’ in many UK areas and can only be prescribed and monitored by a specialist. There have been reports that even when a specialist recommends Methadone or buprenorphine, some GPs refuse to continue the prescription"

2. On treatments after ropinirole:

"Gabapentinoids: Pregabalin and gabapentin are prescribed ‘off licence’ for RLS. They take 3 to 4 weeks to reach full effectiveness, so it is best to start them around 4 weeks before you drop the last dose of DA.

They will NOT usually override the intense withdrawal symptoms so do not expect them to help during withdrawal or until around 3 weeks after the last dose of DA.

Opioids: Low dose opioids can be very effective in controlling RLS, but can be difficult to obtain because of unfounded fears of addiction or tolerance. The Massachussets Hospital Opioid Registry, set up by Dr John Winkelman, is showing that addiction does not occur unless there is a history of abuse, and if patients are properly screened and monitored. Unlike when opioids are used to control pain, tolerance (the need to take higher doses to achieve the same effect) does not generally happen and the Register shows that patients stay on the same low dose for years.

The main opioids used to treat RLS are Targinact (Oxycontin and naloxone), Oxycodone, Oxycontin, tramadol or codeine. Targinact is licensed for RLS in the UK and is usually taken twice a day. However, Oxycontin has a short half life and can often cause mini opioid withdrawals.The main symptom of opioid withdrawal is RLS. Many people report that Oxycontin does not cover their RLS symptoms and that they experience RLS breakthroughs. But, as with all medications used for RLS, everyone reacts differently.

Methadone and buprenorphine are highly effective for refractory RLS because they have a long half life."

Good luck!

[Joolsg]

The last 1mg is usually the hardest.Well done for getting this far.

Sadly, the Walton Centre isn't very good for RLS.

We have had reports on here that the neurologists at that Centre have switched patients experiencing augmentation to another Dopamine agonist.

So. Do NOT let them prescribe Pramipexole or Neupro or Levodopa.

Take the iron supplements once every OTHER day. That raises brain iron levels more quickly as it fools Hepcidin- a chemical our bodies release to block iron absorption.

Keep reducing by 0.25mg every 2 weeks.

Ask for 30mg codeine, 50mg tramadol or 10mg oxycodone to take for 4 nights after each dose reduction to settle the increased RLS.

Start pregabalin or gabapentin at NIGHT only around 3 weeks before you drop the last Ropinirole pill.

But only increase to 150mg pregabalin or 900mg gabapentin until 4 weeks after your last Ropinirole..Pregabalin and gabapentin aren't effective until ALL withdrawals are over. And gabapentin has to be taken in split 600mg evening doses, 2 hours apart.

Show the Walton team the RLS-UK website, particularly the withdrawal schedule and the Iron therapy page.

And also show them the treatment section.

And also mention that you are taking legal advice about a possible negligence case!

As the spasms and muscle fasculations are settling- report that also to the Walton team.

They need to learn about augmentation!

And remember to file a Yellow Card Report listing all the side effects of Ropinirole. Worsening RLS. Muscle spasms.

UK doctors will keep prescribing these dangerous meds until they realise the scale of severe side effects and suffering.

Here's the link.

bnf.nice.org.uk/medicines-g...

[Mikki01 in reply to Joolsg]

Right got it now I've wrote e all this down and going in armed! So reading this I can take 30mg codeine and 50mg of Tramadol on every 0.25 reductions for 4 nights but I should only start gabapentin or preabalin when I've got to 0.25 amd 3 weeks before I stop it completely.The gabapentin would be 900mg at start then go up to 2 splits of 600 at night, as my rls starts early can I take 600 at let's say 6pm if I can make it that long and 600 before bedtime.

Sorry it's so much to take in and the doctors have no bloody clue to I'm going to give them this formula.

I'm at 4 0.24 so in 2 weeks I will go to 3 then 2 weeks after to 2 x 0.25 can I start the gabapentin then or only when I'm at 0.25

Then I take

[SueJohnson in reply to Mikki01]

Start gabapentin at 300 mg not 900 mg. but ask for 100 mg capsules so you can increase by 100 mg over the 3 weeks to get to 900.

[Joolsg in reply to Mikki01]

Start when you are down to 2 x 0.25mg Ropinirole.

You start pregabalin OR gabapentin and increase slowly. All set out on RLS-UK website.But I'll set it out here.

Pregabalin

Start with 75mg. Then increase by 25mg pills every other night up to 150mg. Stay at 150mg for 3 weeks after you stop Ropinirole. And monitor. You can continue to increase by 25mg until 200 or 250mg. That should cover the RLS.

Gabapentin

Start with 300mg. Add 100mg every other night to 600mg. Take it 2 hours before bed.

Then start to add 100mg every other night up to 300mg and take that dose 4 hours before bed. (Leave 2 hours between doses & avoid magnesium 3 hours either side of a dose).

Stay on 900mg for 3 weeks after you stop Ropinirole. Monitor.

Increase by 100mg doses up to 1200mg and monitor.

You want to keep to the lowest effective dose.

I after 2 months you still have RLS symptoms- report back here.

Gabapentin and pregabalin work well for many people but not for all.

You might need to switch to a low dose opioid if gabapentinoids don't work.

[Mikki01 in reply to Joolsg]

Fab got it took a while thank so very much