Good news,I hope !

[Coopersmum]

My GP has just called to say that she had received a letter from the Neurologist. They have agreed that I can start to reduce the Ropinerole by 0.25 and start on 50 mg of Pregabalin while I'm still on the waiting list for the iron infusion. I told the GP what Sue Johnson had advised ( thank you Sue). It's lower than the starting dose that you suggested Sue, but I will persevere. The GP will be calling me again in the 18th of June to see how I'm getting on and reduce further and increase the Pregabalin. I really hope this works, as I don't think I can take much more.

[SueJohnson]

That's great!

[Joolsg]

Mmm. The neurologist clearly doesn't even know the NHS and NICE guidance on RLS.cks.nice.org.uk/topics/rest...

As you can see, NICE say the 'starting' dose is 75mg and can be titrated up to 450mg.

Withdrawal from Ropinirole is hell and you really need more help. A low dose opioid like tramadol, codeine or oxycodone can help enormously.

See the RLS-UK website, which sets out the withdrawal schedule.

Hopefully your GP will read it and prescribe an opioid.

[Coopersmum in reply to Joolsg]

Oh no, I've just seen this and looked at NICE guidelines! I am currently prescribed cocodomol. Is this the same as codiene?

[Joolsg in reply to Coopersmum]

Co codamol on prescription usually contains 30mg codeine, so should help, although it's the weakest opioid.At the last stage of withdrawal, I was taking 50mg tramadol every 4 hours for about 10 days. I then switched to pregabalin and Oxycontin.

The iron infusion doesn't work for everyone, so keep taking ferrous bisglycinate every other day in the meantime.

Medical cannabis can help.a little as well, but it's expensive.

[Coopersmum in reply to Joolsg]

I've just had a look at the letter from the neurologist on my records and they do say to increase the Pregabalin by 25mg after a week. So I have sent an econsult to ensure that this is included in my prescription. OMG this is so complicated, what would I do without advice on this platform?

[Joolsg in reply to Coopersmum]

Don't worry too much as pregabalin doesn't stop the severe RLS caused by Ropinirole until you've been off Ropinirole for about 3 weeks.The increased, severe RLS and withdrawals override pregabalin.

That's why low dose opioids are prescribed during withdrawal.

You could ask the GP to prescribe tramadol/oxycodone.

They do not understand withdrawal from Ropinirole is worse than heroin or crack cocaine withdrawal.

Ideally, we should be in rehab for 6 weeks!

Ensure you arrange time off work and clear your diary for the 3 weeks after the last dose of Ropinirole.

You will have constant, very severe, RLS, violent leg jerks and no sleep for around 4 days. But everything starts to improve thereafter.

Stay strong. It's hellish, but you will get through it.

And bear in mind most neurologists and GPs are completely unaware how serious withdrawal is. Consider taking a video to show them.

It might stop them prescribing these drugs.

[Coopersmum in reply to Joolsg]

I have been off work due to augmentation. It is really awful and effected my mental health greatly. The GP and Neurology have kept me waiting all this time with no improvement or any ideas as to how I get through this. Now I have to go through this, but at least it's a step forward. Still on the waiting list for Iron infusion. How does anyone cope with work during the withdrawal process. I can't stay off until this is withdrawal is complete !!! I really need some advice on how I can manage withdrawal and work.

[Joolsg in reply to Coopersmum]

Call the GP and ask for a sick note. Working while going through withdrawal from a dopamine agonist is practically impossible.They put us on this poison, so they can arrange for us to safely withdraw.

Show your GP the RLS-UK withdrawal schedule. It's at the bottom of the link. You can print it off to show GP.

rls-uk.org/useful-resources

[Coopersmum in reply to Joolsg]

The GP has been giving me sick notes since the end of April. I haven't been back to work since. If I can't return even for short periods while I'm in withdrawal I fear this may be the end of my career. I will need to have a conversation with HR. I had hoped that there may be periods during withdrawal that I may be able to return.

[Joolsg in reply to Coopersmum]

If your GP/neurologist will prescribe Buprenorphine, a red listed opioid, that appears to substantially reduce withdrawal symptoms.You could argue that it will be 'cost effective' to the NHS as it allows you to return to work productively a lot sooner than otherwise.

Many of us have seen our RLS reducec to zero on low dose Buprenorphine.

It is highly effective and doesn't cause addiction ( unless there's a history of drug abuse) or tolerance.

[Coopersmum in reply to Joolsg]

I can certainly look into it with the GP. Would this affect starting on the Pregabalin? As surely this would be short term treatment while going through DAWS

[Joolsg in reply to Coopersmum]

No. It is a drug used long term for refractory RLS.It reduces dopamine agonist withdrawal symptoms though, unlike pregabalin.

Pregabalin is usually prescribed after dopamine agonists, but the transition can take several months.

That's why I mentioned Buprenorphine.

[Coopersmum in reply to Joolsg]

Thanks for explaining. All I can do is ask. I'll keep you posted.