Does anyone live in Wales and have medication other than Ropinorole. My GP has said that is the only one Licenced for RLS.

[cefndaniel]

[Hidden]

Hi, i have trying to work this one out for you...The only thing i can suggest, is put N.H.S Direct in a search, or N.H.S Choices, and i think it will give you info for Wales as regards medication. for RLS..of course i guess you could phone them, and tell themyour doctor says there is only one medication for RLS in Wales..or, if they could tell you what medications are available for RLS in Wales....

Good luck, i know you are desperate..

[cefndaniel]

Thanks Elisse going to do as you say tomorrow. You are right I am at my whits end but then tell myself their are plenty worse off than me so get a grip Lynda and stop whinging.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[nightdancer]

It says on the NHS RLS page that 3 meds are licensed for RLS "in the UK". It lists the patch, Neupro, and Mirapex and Requip. It also explains that other meds CAN be used "at the discretion" of your doctor" that could be "beneficial". So, they do prescribe things "off label" as we do in the US. And, we ALL whine. We have an inalienable right to whine. RLS can lead to serious sleep deprvation, which can kill you eventually, and cause all kinds of other issues with your cardiac system, Diabetes, etc. Looks like there needs to be some awareness work done in Wales, as well as every other country n the planet.

[johnw2611]

If your doctor accepts that you have RLS he/she should be able to prescribe PRAMIPEXOLE (generic name for Mirapex etc.) This is by far the best treatment for most people and is certainly available on NHS prescription. The only possible exception might be if you are taking certain other medications which are incompatible with Pramipexole. It is also prescribed, in larger doses, for Parkinson's Disease but that is a separate application. Perhaps you could discuss this with your local pharmacist - who probably knows more than your doctor about prescriptions! Have you looked up Pramipexole on Google? If all else fails, I would be tempted to try another doctor! Hope this helps.

[cefndaniel]

Thank you John. Everyone has been so kind and if I have not thanked anyone personally in a reply, sorry I am so knackered and just want to sleep, even the computer now is a problem as I cannot keep still long enough to type.

Going to Google Pramipexole. Thank you all

[Hidden]

Please let us know how you get on....i for one really hope you get a medication other than the Ropinerole.

Dont worry about thanks, when you are so sleep deprived our brains become mush..Hard to know what time of the day is, let alone anything else...

[jumpylegs]

I take a cocktail of ropinerole and tramadol to deal with my 24/7 rls symptoms. This has the benefit of keeping both medications as low as possible and thus reduce the possible side effects. What an rls sufferer needs to know before taking a DA (ropinerole or mirapex) is that their blood ferritin level needs to be up around 100 in order to try and avoid the augmentation that a DA can cause. i.e. where a medication eventually causes a worsening of the symptoms. Most doctors will reckon that around 20 is normal but this is not so for sufferers of RLS. It is not a test that is automatically done during a normal blood test and needs to be specifically requested. Ferritin is the iron stored in the brain and is a more accurate indication of iron levels than an ordinary blood test which could show your iron as ok. All rls sufferers should know their ferritin level especially if considering taking ropinerole or mirapex. Low iron and low ferritin in particular can be a contributing factor with rls.

[Scarlett]

Hi - I live in Wales and have been on Mirapexin for about 6 years now. It doesn't cure the RLS but certainly helps to control it; before being on them I had the RLS almost permanently. Hope this helps.

[cefndaniel in reply to Scarlett]

Thanks Scarlett yes it does, where abouts are you? I am in Swansea. Glad to here you are getting some relief.

[Scarlett]

I'm in Llanelli so not too far away - I used to work in Swansea, in St Helens Road. Sadly I had to finish 4 years ago as I also have MS. If ever you want a chat I'm often online.

[cefndaniel in reply to Scarlett]

Hi Scarlett

If you are on Facebook you can friend me Lynda Harrison-Twells would love to have a buddie with RLS sounds selfish but having this horrible illness you will understand. Sorry to hear about your MS my cousin suffers from it.

[Halli]

Good to read about others in Wales, I am in Cardiff and have only been offered Ropinerole. I've just had the dose increased and feeling much better at the moment as i actually get to sleep for more than 3 hours a night. However, I know it won't last so I'll keep this information to take with me next time I have to go to the doctors.

Hallie

[stan38angler]

hi to all that live in WALES not seen your posts before  ive had rls for approx. 12yrs  am on pramipexole 3x0.18mg I am sure I am going into augmentation have told my [doc] he wants me try taking less? no good!!! am trying to find out about RELAXIS PADS have any of you any idea??     I live in ABERDARE  would like to talk somemore   STAN38ANGLER