What now>>>>>>>>>>>>>>>>>

I went to see my GP (in the UK) today and know that I have reached augmentation with Ropinorole after many years. Asked if I could try something else like Mirapexin or one of the other drugs I have seen mentioned on this site and wqas told a straight NO nothing else was licenced by NICE for RLS this to me means I have nowhere to go with this and am feeling quite desparate. Has anyone else in the UK been subscibed an alternative to Ropinorole. This is just crazy

26 Replies

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  • of course my tired mind means prescibed, sorry

  • hi, im in the UK, and so far ive had gabapentin, ropinerole, neupro patch, and now mirapexin,so dont know how your doctor can say that, have you got another gp at the practice that you can see, may be worth a try.

    jean

  • Hi there :)

    Your gp is not being at all helpful. I would advise you see another gp or if you feel brave enough visit this gp again and print out the following for him to look at and take note!

    nhs.uk/Conditions/Restl... to learn more about the medications available for RLS.

    I wish you well,

    Kaarina :)

  • mirapexin, gabapentin are both widely used for RLS.

    CHANGE your GP. Its easy and its your way forward.

    Kindest

    Bob M

  • Hi thank you for the reply. The link does not work could you give it to me again. This is the best Doctor in the practice, it is all about money with them. I have asked for referal for my legs and their is no funding but is available if I pay amounting to thousands. I am sixty almost and have never claimed or been unemployed since I was 16 now I need help it is not there. Sorry to rant, hope you are coping with your RLS

  • I don't get where your GP is coming from - I've been on Miripexin now for about 5-6 years and while they don't cure the RLS they have reduced it quite a bit.

  • I have the same problem as cefndaniel. My doctor refuses to prescribe another medication. I'm on Ropinirole and it gives me side effects. Before that, I took Lovadopa for 10 years. It really helped, no side effects, but stopped working after 10 years. So my GP believes that I'm switching meds too often!!

    It's really frustrating when the RLS is not being taken seriously enough by doctors. It is such a horrible condition to live with as it is. Not getting enough help from our GP's doesn't help. My GP wants to send me to a sleep clinic! We all know why we don't sleep properly like other people. Us with the RLS I mean. I'm going to seek out another GP to get some help with the medication.

    Here in Canada we have Walk-in-Clinics, meaning we can go and see any doctor we want. Otherwise it's almost impossible to switch from one doctor to another. Hopefully you'll be able to see another GP to get some help!

    All the best!

  • Hi, just to say, i would take up your doctors offer of a sleep clinic, i know we know why we dont sleep, but a sleep study can be helpful, it can show up other sleep problems which you might not thought you had. A sleep study does not diagnose RLS, that is by 4 criteria which you state to your doctor verbally.

    But by all means see another doctor if it means you get some different medication other than the Ropinerole, Your own doctor needs to understand that not all meds for RLS, suits everyone. We are all very different when using meds, which is why some of us go from med to med trying to find one that works AND we can tolerate the side effects.

  • Tramadole works great for me. Had terrible side effects with ropinirole. My GP recognises that rls sufferers often know more about the treatments than most GPs.

  • Hi there again!

    nhs.uk/Conditions/Restless-...

    Hopefully this will work. :)

    Kaarina

  • WOW, you poor thing, dont know where abouts you are in the UK, But i live in the south, and my doctor is great, he has let me try all there is for my RLS, and i have tried them all. He even asks me when i have gone back yet again, have i got anything up my sleeve, he knows i know alot about RLS and the meds.

    He even lets me dose myself as he knows my tolerance is very low when taking them.

    I have tried, pramipexole, tramadol, codeine, liquid oramorph, gabapentin, and the Neupro Patch, which i am now using for the second time round. Pramipexole, Ropinerole and the Neupro Patch ARE licenced by NICE to be used for RLS. So your doctor needs to look again at his medical book...

    The other meds, are off label, but can be used for RLS. and many doctors do use them when all else fails. I am so sorry your doctor is being so unhelpful.

    Irene...

  • I think this a local thing apparently NICE have ok'd the meds but my local PTC (council) will not fund it. This is the impression I am getting. I am at my whits end been up since 1.28am this is my fourth night with only 2 to 3 hours sleep. She has reffered me ro a neurologist for tests but not on the NHS so not only do I loose sleep with RLS I have to pay for the privilage of getting treatment. Do not get ill in Wales. Free scripts are a joke when the meds are inferior. I am angry, frustrated, at my whits end and knackered. Sorry ranting again.

  • Geesh, and i always moaned that Wales got free prescriptions and we here in England, didnt...(altho i dont pay for mine as i am retired now)

    He has got to be able to give you something else to try, it doesnt make sense otherwise. I would go back and try again, if he is looking for something cheaper, then maybe the pain meds. would be in their funding...suggest Tramadol, or codeine. You could also try OTC co-codamol, altho these can be additive and gives a warning on the packet, co-codamol has codeine in it.with paracetamol.

    Please do not be sorry for ranting, you have every reason to. When we are sooooo sleep deprived its hard not to feel the way you do. Most have gone down that road, so we understand...

  • I live in the U.K. and have just started on Gabapentin, repinerole made me ill, I also take cocodamol all on perscription from my g.p. at present not getting much sleep just hope as I increase the dossage of Gabapentin that I can get a few hours sleep. Its such a miserable condition, please dont give up go and see a different G.P. XX

  • She has given me Tremadol 1 x 50mg at night to add to the Ropinorole. She did not know that Tremadol works and it is a fine line between hey mate I have researched this and know more than you and accepting what they say. Going on Monday to have bloods done for Feratin levels and back to see her when I can get an appointment. took 4 weeks last time she is the most popular Doctor and I think her hands are tied. Our house is now up for sale (a 5 star B&B) it is our income as well but need to move back to England to get proper medical care and the NHS in Wales is like living in the third world. I am also thinking of using my sisters address to reg with a Doctor up there. Desparate times need despatate measures. Our surgery is the only one for 10 miles and those others that are close will only take on those living 'within area' Do feel better this morning as I have sorted things out in my head and no where I am going. Thanks for all your comforting words, you are a great bunch of people

  • If you stay on the Ropinerole, the Tramadol wont probably work because of the augmentation. You need to get off the Ropinerole, and thats easier said than done, even tapering off of it, will send your RLS nuts because you are taking the dopamine away and your RLS doesnt like you doing that.

    Also 1 x 50mg of Tramadol probably wouldnt be enough for your RLS, by its self. Sorry you have to give up your home and lively hood to move back to England, to get the treatment you need.

    Its the same here in England, you cant just change doctors that easily if you are out of the area of their surgery.

    Good idea about using your sisters address, is she far from Wales, that you could travel back and forth to get treatment, you would have to be careful on that one.

    At least you are in a better place now you have made plans.

  • Thanks Elisse my sister is in the North so a 200 mile journey which in itself is challengeing. The train is my best bet because I can walk around. I am going to have the feretin blood test and humour the Doctor a bit and have also though if I get a private prescription to get me off Ropinerole and use something else for a while. How long do you think it would take to ween myself off Ropinerole to get rid of the augmentation so that I can start it again and it will be effective. I have some money saved so could use that. Had a good night last night got almost 5 hours which is brilliant. Got two viewings on the house today so wish me luck.

  • i weaned myself of Ropinerole, and i didnt suffer to badly, it took me about 3 weeks.Best thing to do, get the thought in your head, "its not controlling me, im controlling it" , its hard, but you really need to get of ropinerole, worse drug ive ever taken, i wish you luck with it

    jean

  • I did some research on line once looking at the most obscure sites I could find referring to RLS and I came to the conclusion that it's something to do with the brain's inability to absorb iron. Therefore you need to keep your iron levels much higher than normal. Ferritin is the way your body stores iron and normal levels are 15 - 200. I came to the conclusion that RLS sufferers need to keep their ferritin levels above 50 or even higher.

    Nobody has mentioned Clonazepam in this thread. I don't think it's a particularly expensive drug and is certainly the only one that works for me. Might be worth a mention to your GP. It seems a shame to move from beautiful Wales to England just to change your GP.

  • Hi thanks for that info. I am going tomorrow to have my ferritin levels checked. I also read the the valves in your legs can sometimes cause RLS if they 'leak' went to GP she referred me privatly to a neurologist (not covered on NHS in Wales) and for a 20 minutes Doppler test and consultation was told to wear support stocking.!!!!!!!!!!!!!!!!!!!!!!!!!!! My purse needed no support on the way out as it was £325-00 lighter. If I had anything at all restrictive around my legs I would go bonkers

  • Thanks Jean what do you take now?

  • You could take Mirapexin, its similar to Ropinerole, some people do better on that one. If you took Mirapexin, you can go straight off the Ropinerole, you may need to up the Mirapex to get to the right dose when stopping the Ropinerole. They are both dopamine agonists so stopping one to start another doesnt need weaning off.

    It is worth getting the ferritin level done, it should be 50 or above, actually i have seen some info the last couple of days that says it should be 75 now. Below that number you can start a iron tablet course to see if it does help with the RLS, it is very hard to get the ferritin level up, most dont manage to do it.

    If you do the iron pills, as long as you do it with your doctors instruction, take a Vit.C tab with it, its to help the iron to absorb.

    Some people do a "drug holiday" where they alternate between Mirapexin and Ropinerole., probably taking the other one for about a month...

    Good luck with the viewings.. :)

  • Sorry, didn't read this and you've just said the same as me. I know that one time I got anaemic and the RLS went into overdrive. It wasn't very pleasant.

  • Would like to add to the above....as everyone is different, i can only suggest to you what might help... :)

  • In Canada fentanyl 25 mg patch really helps RLS

  • Fentanyl 25mg patch is used in Canada when the other deugs don't work and it is quite helpful

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