Hi I’m new here

[Blanketeer]

I have just discovered this group and already I feel better informed after reading some of the threads. I am struggling with Ropinorole as it is no longer working for me, despite gradually increasing the dose from 0.5 to 1.5 mg. I’m waiting to speak to my GP, but I think my condition is worsening, so I have to decide whether to continue to increase the dose or to wean myself off it. It is comforting to have found this community of fellow-sufferers.

[Hidden]

Hi and welcome.

If ropinirole, which is a dopamine agonist (DA), starts to fail, this is known as "loss of efficacy".

It seems common sense to increase the dose in this case. However, this is possibly the worse thing you could do as it will considerably raise the risk of you suffering "dopaminergic augmention" a very common major complication of taking a DA.

As you say your symptoms are worsening then you may already be experiencing augmentation.

It is best then to do as you've thought and that is to reduce the dose and stop taking the DA.

Some bullet points about this.

* Do NOT stop it suddenly. Reduce it by no more than 0.25mg at a time (or even less).

* Reduce no more often than once every 2 weeks, or even longer

* Each time you reduce it you may experience withdrawal effects which are a temporary worsening of symptoms.

* The smaller the amount you reduce it by and the longer you leave between reductions, the less the withdrawal effects will be. The faster you reduce the more severe the withdrawals will be. You can adjust the speed, (amount and timing) accordingly.

* You may need a replacement for the DA. The alternatives are an alpha 2 delta ligand, either pregabalin or gabapentin. Do NOT switch to another DA, i.e. pramipexole or rotigotine. You can start taking the ligand before you stop taking the ropinirole.

* Ask your GP for a blood test for ferritin, if the result is under 75ug/L start taking an oral iron supplement.

* If you're taking any other medication for any other health issue, then it may be one of the many things that make RLS worse.

* Be aware that it's distinctly possible your GP won't know anything about what I've written, may never have heard of augmentation or about alpha 2 delta ligand for RLS. If they disbelieve you then you can refer them to the following web site

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

Particularly note this page

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

You can also refer them to this site.

sciencedirect.com/science/a...

[Blanketeer in reply to Hidden]

HiThanks very much for the sound advice. I’ll be speaking to my GP at the end of next week and will see how much she knows!

[Hidden in reply to Blanketeer]

Good luck, I hope it goes OK.

[Joolsg]

Manerva has given you excellent advice. Sadly most GPs and neurologists don’t know anything about RLS and have never heard of Augmentation. That’s why we all research the disease fully.

Ropinirole caused severe augmentation for me and my neurologist increased the dose making it worse.

I found this group & with their help got off it. My GP was appalling- never heard of Augmentation & had no idea how severe withdrawal could be.

Read all you can and DO NOT increase the dose. The prescribing text books used in the UK suggest the max dose is 4mg but that’s outdated and wrong. Also don’t let her switch you to other dopamine agonists like Mirapex (pregabalin) or the Neupro patch (rotigitone).

You may find raising ferritin above 250 resolves your RLS. If not, opioids or Gabapentin/pregabalin are better meds than the dopamine agonists.

Good luck & let us know what the GP says.

[Hidden]

Great advice from Jools, as usual.

Just to say that the other two dopamine agonists for RLS are pramipexole (sometimes branded as mirapex) and rotigotine ( branded as neupro).

The alpha 2 delta ligands are pregabalin or gabapentin.

Drs in the UK cannot prescribe a branded medication unless there's no alternative.