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Restless Legs Syndrome

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Ropinirole and pregablin

Shellmor13 profile image
15 Replies

I posted on here few months ago the doctor had me up to 1800 of gabapentin a day i have weaned off it all as didnt like side effects i was put on 0.5mg of ropinirole when i finished gabapentin i had the worse nights ever with my rls i am now on 1mg of ropinirole a night and 50mg of pregablin 3 times daily and tramadol its helping me sleep and calmed rls a bit my question is are these 2 drugs together alright to take over time would appreciate some feed back

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Shellmor13 profile image
Shellmor13
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15 Replies

I have often posted my view that in recalcitrant cases rls can respond well to a combination of drugs - each taken at low doses. So far as I am aware, there is no specific counter-indication to any of the drugs you are on being taken together - I was on a combination of dopamine agonist, alpha 2delta ligand and opioid at the same time for a time and found it quite effective. However, I would definitely not increase the ropinerole any further - if anything I would look at reducing it and possibly increasing one of the other drugs. I am not sure what the highest dose of pregabalin is but I think it is possible to go higher than 150mg in a day.

Have you had your serum ferritin checked? Raising iron levels has a positive effect on the symptoms of over 50% of sufferers so it is well worth looking at. Make sure you get the actual figure if you get tested - not just that you are 'normal'. Normal can be as low as 12 but for rls sufferers it should be at least 100, ideally over 300.

Shellmor13 profile image
Shellmor13 in reply to involuntarydancer

Thankyou for your reply i asked my doctor for a serum feritin for the actual number and totally dismissed it and said my iron was normal i will b seeing a different doctor soon and i have finally got referred to a neurologist but not til end of september i have been advised about how much repinirol and would def not go higher than 1mg at the moment i am scared to change anything as i am actually getting some sleep although my poor husband doesnt get as much as he says my legs moving about wake him up lol once again thanks appreciate your feedback

involuntarydancer profile image
involuntarydancer in reply to Shellmor13

As soon as I get my symptoms under control and start sleeping, I start questioning my drug regime, thinking about reducing etc so I feel slightly hypocritical saying this BUT if you are actually sleeping then I would suggest you enjoy it. Good sleep is rare enough for rls sufferers. That's not to say that you shouldn't keep a weather eye on your drugs, symptoms etc. but you are entitled to some good times ...

Graham3196 profile image
Graham3196 in reply to Shellmor13

I don't think your doctor has the ethical right to refuse you a copy of your path report. It is a report on your body and you should have a printed copy. Its an arrogant act and definitely a new doctor is required IMMEDIATELY. I wonder why they don't want you to see it. Perhaps they are sick and tired of RLS patients complaining about their ferritin being only 50 when it should be raised to 350 as soon as possible. For some people all their RLS worries go away as soon as they raise their ferritin level.

Ruccsack profile image
Ruccsack

Hi, I too am on Ropinirole and Pregabalin. My Ropinirole I take is 2x2mg daily and Pregabalin is 2x150mg daily. I have been on both these prescribed medications for three years. They both help me with my RLS especially at night when I need it most. I do get RLS during the day and I take 1x2mg of Ropinirole and 1x150mg of Pregabalin over and above the doctors prescribed limit of 2x2mg of Ropinirole and 2x150mg of Prebagalin. Taking the extra Tablets/Capsules does help me get some sleep during the day. My sleep is disturbed at night as I have to get up and walk around to help until the medication kicks in. My Pregabalin has now become a controlled drug in that it is addictive and has to be signed for at my pharmacy. The effects of taking Pregabalin make me very dizzy and very unsteady on my feet and I have to lie down. I also take a very strong painkiller called Targinact 20/10 again a controlled drug and very strong in its after effects. This drug is coated and is slow releasing. I feel that I have to take the aforementioned drugs in order to get some sleep.But they are very addictive and my GP watches very closely how I manage taking them. If you drive, then you cannot take these drugs as they will impare your concentration as they make you very tired and lethargic. I am lucky that I have my wife to drive my car for me. As I have said, the Pregabalin and Targinact are very strong, so long term you will become reliant on them to the point of being very addictive. Pregabalin in some cases can be up to 300mg daily hence being very closely monitored by your GP/MD. Hope this info is of some help to you.

Shellmor13 profile image
Shellmor13 in reply to Ruccsack

Thankyou it is helpful i will be very careful and try hard not to increase my dose and just be thankful that at the moment i am getting a good 5 to 6 hours sleep

Joolsg profile image
Joolsg in reply to Ruccsack

Ruccsack- 6mg of Ropinirole is way too much. I suspect you’re in Augmentation which is why you have added high dose pregabalin and Targinact.

Targinact alone would control your RLS if you can get off the Ropinirole.

I would definitely review your meds and read all the articles on Augmentation.

Ruccsack profile image
Ruccsack in reply to Joolsg

Thank you for your kind comments. I have sleep problems at night and I get up or read as a result. I am prescribed 2x2mg at night but because of my tiredness during the day I take to bed but my RLS wakes me up soon after hence I take an additional Ropinirole. You maybe right in that I might be in augmentation. I certainly will adjust my medication accordingly. Thank you again for your help.

Smiler53 profile image
Smiler53 in reply to Ruccsack

Hi, sorry to pop in here, but I have to say your Ropinerole dosage is very high and probably giving you augmentation, as you mention you have rls during the day.

restlessstoz profile image
restlessstoz in reply to Ruccsack

Hi, you sound just like me six months ago! For about 2 years I'd been getting RL symptoms in the daytime and thought it was just that i had a particularly bad case of RLS. It kept getting worse and I (my neurologist) kept increasing and adding drugs to control the symptoms. Finally in what was the the best stroke of luck I've ever had, I came across this site and was told that RL symptoms don't occur in the daytime, it's an evening/night affair and that the daytime symptoms were due to augmentation. I hadn't heard about augmentation before (nor had my neurologist!) and in desperation took the advice of the wonderful people on this site.

Six months on, and some of it not pleasant at all - withdrawal was no fun, and I'm not on any dopamine agonists even though I tried two different ones in the last 4 months when i was so desperate to stop legs. Within a week i was augmenting on each of them! Now I'm on tramadol 100mg twice daily and pregabalin, 225 mg at night and have no symptoms to speak of!!! Occasionally a very vague stirring, but nothing that lasts more than a walk round the house and a trip to the loo. I feel SO grateful for the advice and support i was given and know I would have been just getting worse and worse without it.

I've also been looking into dietary triggers and suggest that's another area you can look into to improve your quality of life and get some better control over your RLS. There are several posts that you can read about that. I've found dairy, gluten and certain FODMAP foods aggravate my legs. I've also just realized that chicken is a food that seems to set them 'buzzing', which may be the glutamate in it- another area to look into perhaps.

Do read the article on augmentation and take note of people's experience and with luck the picture will be a lot better down the track for you too.

Katehughes profile image
Katehughes

I take pregabalin and ropinerole together each night and they work like magic.

Bat3353 profile image
Bat3353

I’m on 3 mg Ropinorole and 2mg neupro patch for 10 plus years and no rls

Shellmor13 profile image
Shellmor13 in reply to Bat3353

Thats great hope it continues i would love nothing more than mine to go away just want to remember what its like to b normal again

Shaft1952 profile image
Shaft1952

Hi Shellmoor I did have ropinerole and was great but then I augmented. Have been virtually on all now having break through's again. I see consultant December, but may speak to her secretary before then. Good luck with ropinerole shaft1952

Sara_2611 profile image
Sara_2611

I don't know. My apologies. Presumably your GP wouldn't give you all of them if there was a clash??? If I were you - to make more than doubly sure I d ask him

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