Has anyone got hold of Neupro (Transdermal Rotigotine patch) in the UK, and had any success for RSL.

[DiverG]

To continue on the situation with my 91yr old Mum. 1st thankyou to all who replied to my last question. She has been taking Cabergoline for 2 weeks now, alternating 1 to 2mg dose. It did seem to be having an effect, and she was able to sleep better, but then every now and then she will get nights when it will have no effect at all, does anyone know why? Also I am curious about this Neupro Patch as it is a new product, and one not linked with Parkinsons medication. When she asked her doctor ( in UK ) about it, he said never heard of it and no such thing. Well he is talking rubbish because I download a 2 page pdf doc from the British NHS website nhs.uk giving all the information about it, so how can he say never heard of it, more like he cant be bothered with a 91yr old. So has anyone manage to get it on prescription in the UK and had any success with it.

[nightdancer]

NO med works all of the time for anyone for RLS. That is normal, whatever normal is. :o) Neupro IS a Parkinson's med, and it is not new in the UK. We have people right here who have been using it all along. It was only pulled from the US market, and it is first and foremost a Parkinson's drug. It is a dopamine agonist just like Mirapexin or ropinerole or cabergoline. all same class of meds. That doc has a lot to learn. It was never removed from your market. You guys have always had it in the UK. So, remeber it is not new, and it is the same kind of med as the others forc Parkinson's except it is a patch and is time realeased. It may be better for your mother, since it is time released and it lasts 24 hrs. But like I said, no med or combo of meds works all the time. I am on the very nest meds for me, and I still get attacks a few nights a month, and smaller attacks on other nights. YOu are in the UK , right?

[nightdancer in reply to nightdancer]

Best meds, not "nest" lol

[Hidden]

hi yes i have used it, will good results, also Elisse is using it now, im sure she will get back to you about it when she sees this.

just a thought, but my mum had rls, and her doctor was very reluctant to give her rls meds, due to her age at the time, she was 83 then, she had OCPD and Altziemers (sp), so dont hold out to much hope for your mum getting them, but i really hope you can get something sorted for her soon.

jean-birmingham-uk

[nightdancer in reply to Hidden]

That is what happens as you age. the meds hit you harder, so docs are afarid to prescribe things for older patients; in the US, too. Then , of course it is the patient that suffers, and when you are 91 you should NOT have to suffer. Drives me nuts!

[Hidden]

hi yes i have used it, will good results, also Elisse is using it now, im sure she will get back to you about it when she sees this.

just a thought, but my mum had rls, and her doctor was very reluctant to give her rls meds, due to her age at the time, she was 83 then, she had OCPD and Altziemers (sp), so dont hold out to much hope for your mum getting them, but i really hope you can get something sorted for her soon.

jean-birmingham-uk

[Hidden]

The Neupro Patch has been available in the UK for about 1-2 years now. So your mum's doctors is being either really lazy with catching up on what is available or cant be bothered. which is sad.

I am using the patch, and having good results. But as nightdancer has said nothing seems to work 100% everynight. Can anyone go along with your mother to her doctors, another relative maybe, she might get a better response with someone who is younger than your mum going with her.

[nightdancer in reply to Hidden]

reat idea. an advocate is really needed in this situaton. My mother is 84, and they always look at me for the answer to any question. I got upset one day, and just said, "she can hear you, you know, and she can speak, too, so ASK HER. IT is shameful how people get treated in general because they are aging.

[Rish]

Hi I have been using the neupro patch for nearly 3 months and so far it works great! The only thing I find is if I travel for a few hrs then my legs start to twitch but I know it's when my sitting position is irritating my back !

35 from Cumbria uk

[eileen49]

I am in the UK and have been using the patch for about a year. I couldn't be without them as they work 24/7. The only thing I dont like is they leave scars and itch sometimes.

[DiverG]

Thank you to everyone who answered my question. I will pass the information on to my Mum and arm her with writen information to show the stupid Doctor, and hope he responds. Unfortunately I cant go with her as she lives in the UK and I live in France, but she can stand up for her self, and if she has writen information about Neupro all the better. Will keep you posted as to how she progresses. Thanks again.

[Hidden]

Hi DiverG, I've had RLS for 3 and a half years now, and I tried around 13 different medications, one of them being Ropinirole ( also used to treat Parkinsons). i had no life as they all either didn't work of only woked for a while. Ropinirole was better but I augmented badly on it, so came off it and straight on to the neupro Patch. in short I got my life back. I call it my miracle patch. Don't get me wrong, as the other posts mention, it's not 100% and sometimes I get a not so fantastic day but this is not the norm. On the whole the patch is definately what works for me. I couldn't be without it. I live in Scotland, UK so I don't know why your Mum's Doc is saying what he is saying about the availability/existence of the patch. I think maybe he is reluctant to prescribe it because of the cost (apparently a 28 day supply for me costs around £70). Hope you and your dear Mum get a result.

[DiverG in reply to Hidden]

Thank you so much for this information, I will arm my mum with this info when she goes to the doctor, at the moment she is perservering with Cabergoline, seems to work most of the time, we will see, otherwise she is willing to confront the Doctor about Neupro, and I have sent her a 2 page information sheet all about it that she can take with her. So hopefully we can beat this awful RSL.

[Hidden]

Hope you mum's doctor will look read and listen. Unfortunately we cant beat RLS, but we can keep it at bay with medication...most of the time..

[steve57]

Hi, in the community blog there is an interesting one entitled "Blacklisting of RLS drugs in the UK: result of contact with my MP" posted by Tpebop. I hope your mum's doctor isn't feigning ignorance of the patch based on cost.

I have just put my first patch on 5 mins ago and keeping my fingers crossed that it works for me. I hope your mum can get it and I'll keep my fingers for her too. Good luck.

[steve57]

sorry, missed "crossed" out on last line - should have read "fingers crossed for her too".