Great article in Sleep Review by Dr Winkelman, one of the world's top RLS experts.
Increasing the dose is 'lighting the fuel' and those of us that have experienced the severe,unbearable RLS due to augmentation will recognise this!
He confirms that dopamine agonists ( Ropinirole,Pramipexole, Neupro patch) all lead to severe worsening of RLS and most doctors routinely overprescribe them instead of keeping levels below the max dose set out by FDA in USA (and in NHS guidelines in UK.)
Tell us something we don't know. 
I belong to several RLS lists. The number of people prescribed DA drugs without a simple morning fasted full iron panel is mind boggling. The amount of damage done to personal lives is unimaginable.
I despair at the medical ignorance.
Every single day there are several people on here and other help groups with very severe RLS and their GP/neurologist just ups the dose or switches them from Ropinirole to Pramipexole. It's terrifying that there are over 400,000 RLS patients in the USA on doses above the maximum. There are hundreds of thousands on lower doses who will also be experiencing augmentation.
In the UK there will probably be 100,000 on high doses of DAs. And GPs and most neurologists haven't got a clue about Augmentation. They assume it means tolerance & don't realise the drug actually worsens the disease & increases the severity of the symptoms.
hi Joolsg I've never read this article before, I tried Pregablin a while back and didn't like it much but I'm at the end of my tether now because nothing is helping,don't think I gave the Pregablin a chance to work so I'm gonna try again.one gp in my surgery prescribed it for me then another one said its a horrible drug and would never prescribe it for anyone. How on earth is a mere mortal like me supposed to know.Thankyou for all the help and advice.
It is very common knowledge amongst experts and it's why we keep telling everyone who is suffering severe RLS to get off ropinirole or pramipexole. No other drugs will help RLS while augmentation is happening.
So please do NOT try pregabalin again until you have decided to stop the pramipexole. Start reducing slowly, usually with the help of a low dose opioid like tramadol or codeine or oxycodone. Cannabis also helps but you need to apply to a private clinic and pay privately for that.
Pregabalin takes 3 weeks to be fully effective and will only help your severe RLS once you are off pramipexole. Also make sure you have full panel fasting bloods and raise serum ferritin above 100, preferably 200.
Remember that RLS is not taught to doctors in the UK so they have no idea about augmentation. Once pramipexole and ropinirole stop working there are only 3 other classes of drugs left for RLS and pregabalin and gabapentin are now first line drugs amongst experts. Any drug has side effects and especially if given at high doses so your GP was right to be wary but he should realise that pramipexole is a far more horrible drug.
As the article explains, even neurologists are not very knowledgeable and that's why we have to research this disease fully ourselves and keep campaigning for it to be taught to doctors.
Print off this article and the Mayo algorithm and show to your surgery as it's useful to update them on expert advice about RLS. The USA top experts are about 10 years ahead of the UK because they specialise in RLS, see thousands of RLS patients a year and can spend time researching.
Excellent article! The problem as I see it is that DAs totally "cure" RLS at the outset - then it can switch to be the devil itself causing much worse RLS. I don't know of any other therapy that is similar. It is sad that so many could have been helped with simple iron supplements.
Hindsight is a wonderful thing. Just imagine how many of us could have been RLS free without meds if we had been given iron supplements/ infusions as soon as we first suffered RLS?
You're so right. Wonder how Stefan Clements research on ecopipam is progressing? He believes Ecopipam can calm down the D1 receptors and stop augmentation.
Here's an update from Wikipedia...
"Ecopipam is an experimental drug and has not been approved for medical use.[1] As of April 2022, it is in phase 3 trials for Lesch-Nyhan syndrome, phase 2 trials for Tourette's syndrome and speech disorders, and phase 2/phase 1 trials for restless legs syndrome.[1] The drug was also under development for the treatment of cocaine-related disorders, obesity, and schizophrenia, but development for these indications was discontinued.[1]"
en.wikipedia.org/wiki/Ecopipam
Hi Dic, hope you are well. Ecopipam is the silliest treatment for RLS/Augmentation I have read about in over a decade of doing research. It’s a D1 antagonist as you know. And what happens in the long run when we antagonize a receptor? It grows big and strong. People on DAs have already up-regulated their excitatory D1s and of course down-regulated their calming D2/D3s. So now Clemens wants to give RLS patients in augmentation something that will provide short term relief and long term Hell. More Hell I should say. As a matter of fact, we want to give people in augmentation just the opposite of Ecopipam. We want to give them a short-acting D1 agonist in the morning. When you agonize a receptor it shrinks.
Ecopipam’s closest cousin is cannabis I believe. It too is a D1 antagonist. And just like cannabis, Ecopipam won’t do much for people with RLS who are not suffering augmentation. It makes people sleepy and able to sleep thru RLS, but that’s about it. RLS = pathetic D2/D3 receptors and not normally out of control D1 receptors. So blocking D1 receptors either via cannabis or ecopipam won’t do much to relieve our RLS other than making us sleepy.
Clemens has got to know this. So I’m guessing he’s in it for the $$$ rather than the science. I emailed him all this but he never responded. Someone should pose this issue to Dr. B. and see what he says.
There are no free lunches or gain without pain. People in augmentation, or post DA in general, need to down-regulate their D1s and up-regulate their D2s. There are substances out there that do this and Ecopipam is not one of them. We need to stop sitting on our hands and praying that Ecopipam will be the answer or that some other drug company will come up with the solution and instead figure it out ourselves.
Thanks for that detailed, helpful explanation
I know Ecopipam was trialled before & the results were not very encouraging.
Stefan Clements applied for a patent for use in augmentation after others ( Winkelman...) had done the initial trials. He then licensed it to Big Pharma, so you may well be right.
If it works, it may have a short term effect & then, like DAs, turn into a monster.
My pleasure.
Thanks for the explanation!
Dopamine Agonists
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