RLS mum on 6mg of Ropinorole

[Fidgetlegs]

I have had mild to moderate RLS for 25+ years but so far have self managed to avoid meds. My mum of 85 yrs is a severe sufferer and has thought her life tried most conventional medications & alternative therapies, ending up in recent (last 7/8 years) on a combination of ropinorole, tramadol, oramorph to manage symptoms. She ended up on 6mg per day of ropinorole (being told by a specialist that this was ok ) however as the licensed dose is 4mg she has just been told by a GP she needs to reduce it. (Somehow the pharmacy regularly refilled prescriptions early to allow this). I am worried a 50% drop in a short period of time could be dangerous.

Has anyone experience of this and of starting with such a high dosage of ropinorole?

Thanks in advance

[Joolsg]

Ropinirole should be reduced very slowly no matter what the doctors and pharmacists say. They have no training in RLS or dopamine agonists so have no idea how hellish withdrawal can be.The people on here have actually been on high doses of Ropinirole and been through withdrawal.

Reduce by 0.25mg every 2 weeks. Ask the GP to prescribe the lowest dose pills to make this easier as using a pill cutter is not that easy.

There are several people who have been over prescribed dopamine agonists and most have managed to reduce. The worst of the withdrawals happen when you get to the last 1mg. I only got through withdrawal with the help of tramadol and cannabis. Your mum may well need a stronger opioid like Oxycontin or Buprenorphine.

If the GP doesn't realise how serious withdrawal is, show him/her this schedule from one of the top RLS specialist hospitals in the US- Johns Hopkins. Dr. Christopher Earley is the main doctor there and a world expert, seeing thousands of severe RLS cases. He knows what he's talking about.

The photo can be seen better on a smart phone as you can click and expand it. It was posted on a US FB help group.

I can confirm that the description of what will happen during withdrawal is exactly what happened to me.

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[Fidgetlegs in reply to Joolsg]

Thank you very much Jools. I will pass all that on.