Does anyone take Ropinorole XL for RLS?

[whiterose160]

Been taking Ropinorole XL for 10 years, it helps, does anyone else take this?

[Madlegs1]

Many people use it.

It is a good medication, but has the usual drawback of all dopamine agonists.

Why are you asking?

( Says he innocently)

[whiterose160 in reply to Madlegs1]

I asked because it doesn't seem to be recommended in the extended release form for RLS....I take 4mg every evening.

[Madlegs1 in reply to whiterose160]

Sorry-- I took you up wrongly.

I would have thought the extended release form would be far better for longer term relief. It works for many other medications. Tramadol, Oxycontin and so on.

Hopefully someone with better knowledge will come along.

Good luck.

[whiterose160 in reply to Madlegs1]

It's not 100% effective and I suffer badly during the evenings until the meds work, takes about 2/3 hours. I have a new neurologist and he's recommending I add regular Ropinorole to the dose, I'm concerned about augmentation if I do that...don't think he even knows what that means!

[LotteM in reply to whiterose160]

If you think your neurologist doesn't know about augmentation, ask him! If he is in the dark, provide him with good information. RLS-UK website is a good starting point.

[whiterose160 in reply to LotteM]

I tried to explain but he talked over me and wasn't interested!

[Joolsg in reply to whiterose160]

You have to be aware that most UK neurologists are completely ignorant about RLS, treatment options & augmentation. There have been several cases on here where a neurologist has over prescribed Ropinirole and caused horrendous suffering for patients.

I was on Ropinirole XR 4mg for 16 years & had a very traumatic time. Thankfully I discovered this site and realised how negligent my doctors had bee.

We have to educate ourselves, read all the research articles and pass on the information to our GPs & neurologists.

They’re the ones always banging on about ‘evidence based’ medicine yet they don’t base their treatment of RLS on any evidence at all!

Take control of your own condition because your neurologist has acted negligently by suggesting you increase your dose.

It sounds like you’re already suffering augmentation ( inevitable after so many years on high dose Ropinirole).

Read up about augmentation and how to withdraw safely.

Slower is better- take at least 3months, preferably a year. Reduce by 0.25mg every 3 weeks. Ask pharmacist for smaller dose pills.

[LotteM in reply to Joolsg]

Good reply Joolsg

[LotteM in reply to whiterose160]

🤬

[Hidden in reply to whiterose160]

You could try talking to your GP again.

I suggest if you do, you refer them to the National Institute for Health and Care Excellence (NICE) guidance on augmentation.

The guidance is evidence based.

The link to the index page is

cks.nice.org.uk/topics/rest...

This is a link to the section on augmentation

cks.nice.org.uk/topics/rest...

[whiterose160 in reply to Hidden]

Thank you Manerva. Going back to my GP sounds a good idea as my confidence in the Neurologist is nil.

[LanaCSR in reply to Madlegs1]

I don't know about ropinorole, but every time I have tried the extended release version of any pain med, it hasn't worked AT ALL for my RLS. Good luck! I hope you find relief!!

[Arjiji]

You cannot do that "trip" of reducing Ropinirole on your own, you should find a neurologist who knows what dopamine agonist withdrawal syndrome is. If you cannot do without that neurologist, advise him that the AD withdrawal treatment involves lowering the Ropinirole dose by 0.25 mg every 3/4 weeks, replacing it with Gabapentin at least 1200 mg and probably adding 15 mg of Oxycodone.

Do not keep increasing your doses of Ropinirole, since it does not take you anywhere good, the higher you go the more difficult it will be to leave it and the more painful; and one day or another it will begin to have no effect and worsen your symptoms, so start the withdrawal now but replacing it with the drugs that I have told you. You may have a hard time for a week or two, the time that Gabapentin takes effect, but the discomfort can be alleviated with oxycodone.

Good luck

[whiterose160 in reply to Arjiji]

Thank you Arjiji.