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Restless Legs Syndrome
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Sinemet no longer working, what now?

Hi Everyone,

My restless legs is back. I've been on Sinemet for several months but it isn't working any more. I worked really well for a time so I'm sure sorry it's lost it's effectiveness. So what can I do now? I've been through Mirapex, Requip. Gabapentin. Do you know of anything else I can try? What a horrible disease this is. Your help much appreciated. Thanks, Marilyn

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Hi,

Sorry your RLS is back! I hate how some meds. lose their effectiveness over time. I don’t know anything about Sinemet; is it a dopamine agonist? I’m reluctant to give advice on medications since they affect everyone differently. I suggest you make an appointment with your doctor if you haven’t done so.

Good luck,

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Sinemet is known to augment quicker than the other dopamine meds, so whether that is whats happened or you have become tolerant to it. From looking at what you have said you have tried, all i could suggest is a opiate like Tramadol. You need to discuss this with your doctor. Just dont let your doctor up your sinemet dose. Look at the rls-uk.org website it should list meds available for RLS.

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As Elisse has said, Sinemet is the dopamine agonist most likely to cause augmentation and as you have previously been on other DAs which stopped working, augmentation is the culprit.

Tramadol may be an option for you. I think you are in the USA so you need to find a practitioner who will consider Opioids. I know it is a problem over there because of overprescription and misuse.

Pregabalin ( Lyrica in US) is a better option for you than Gabapentin and will probably help. It is also an Alpha 2 Delta ligand but has less side effects than Gabapentin & seems more effective for RLS.

Another option is low doses ( 10mg twice a day) of oxycontin, but again ,you'll need to find a practitioner willing to prescribe opioids and who is aware of how useful they are for RLS.

Best of luck

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Thank you all for your comments. Looks like I'm in deep do do. I can't imagine my neuro prescribing opiods. I wrote him this morning and now I'm just waiting for his reply. I'm so discouraged and sad. Well, we'll see what he says.

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There are always non-prescription alternatives - Kratom and Cannabis help many, well worth looking into.

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Cannnabis doesn't help my rls. I just looked up Kratom and the side effects are very off putting. I appreciate your suggestions though.

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I might get jumped upon for this since it’s a DA, but the Neupro patch is working well for me. For those who say it’s ill-advised to go from one DA to another, I went from Pramipexole to Neurontin to Neupro and am doing fine. So, it might be ill-advised for some people. Everyone is affected differently.

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Thanks Jess, you're right about everybody being affected differently. It's just so frustrating when a med that's worked for a while suddenly quite working. Why why why

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Hear you there!!! The Pramipexole worked like a charm for four years, then poof! It quit working! The body becoming tolerant of the med. or a cruel trick of nature? With RLS it definitely feels as if nature is plays tricks with us, doesn’t it? During my Augmentation period I was convinced that the Devil had taken up nightly residence in my legs (him and a feisty Chihuahua)

I hope you find relief soon!

Stay strong,

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Hi, I too was on pramapexil for about 7 years worked like a dream! Then 1 day 3 months ago just stopped working ☹️ So my Doctor put me on the Neupro I'm on 3G patch, it is working!!! Good luck 😊 It is one of the worst things ever!

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I've never tried a dopamine type tab & don't want to. Pregabalin worked like a miracle then stopped. Currently although by no means a perfect answer I take 2 x paracetamol before I go to bed, no idea if really working, then when I can stand the hourly waking no longer and around 3am I take 30mg codeine. I wish I didn't gab to as am scared of addiction though they advise it doesn't in RLS. Then if I'm lucky I can get 4hrs or so sleep which is wonderful, doesn't happen every night though. If I can grab an hour's nap day time this just about keeps me human along with baths when have the wake ups and knitting to allow me to get back to sleep.

I'm in the UK

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Hey there! My husband has Lewy Body Dementia and he has both Restless Legs and Rem Sleep Disorder. He was diagnosed 5 years ago but his Mirapex has now triggered impulse control issues. We've found some really good 5:2 or 5:3 ratio CBD to THC Cannabis for vaping in Washington, Oregon and California. It's been a bit life changing. Tincture works best for his legs. . . .

Also, if you go to Mexico they sell tramadol over the counter. It's very inexpensive.

The US healthcare system is not the end all be all for taking care of yourself and getting what you need.

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I'm so sorry. LBD is a horrible diagnosis. I hope the cannabis is working for you. I'll have to get packing to go to Mexico.

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