Neupro

[Doped]

Hi all, I've been very slowly tapering off Neupro for aroud 10 months and just a week ago I took my final dose which was a sixth of one miligram , down from 2 mg. I had been on the patch for around 5 years and augmented for many of those. With each reduction I have felt increased anxiety but I'm surprised that this is happening again having been on such a tiny dose before finishing, I was also only using the patch for 12 hours, at night. I'm disappointed to be experiencing these symptoms, any suggestions welcome. I can't use any of the other recommended rls meds due to severe side effects but I'm hoping to try iron again which did nothing before due I'm sure to bring overridden be dopamine agonist augmentation.

[SueJohnson]

Congratulations for getting off Neupro! I know it wasn't easy. It is worst at the end but the withdrawal effects will gradually get better,

Earlier you said you were going to try pregabalin after you got off it. Have you started it and what side effects do you have and how long have you been on it. What about low dose opioids?

[Joolsg]

Hi Doped,See previous replies.

The worst withdrawal when you get severe RLS, constant leg jerks and no sleep and extreme anxiety, happens when you drop the last dose.

Out of interest, where are you and who prescribed Neupro patch and suggested you increase it?

[Doped in reply to Joolsg]

Thanks Joolsg, I'm in Ireland and a Dublin neurologist prescribed the drug, it was increased after I complained of worsning symptoms which I thought was because the drug effect was wearing off, I literally explained augmentation to the neurologist even though I didn't know anything about it, clearly neither did he!

[Joolsg in reply to Doped]

Unbelievable.Here in the UK- a law firm wants to bring a legal test case against a UK neurologist /GP for failure to warn about augmentation and then failure to follow the NICE cks guidance when augmentation has happened.

They will do so on a no win/no fee basis.

It seems to be the only way we will force these outdated, negligent doctors to learn about the dangers of dopamine agonists.

You may want to consider talking to an Irish lawyer to see if they would consider similar legal action??

[JunieBJones in reply to Joolsg]

I have wondered if there had ever been litigation regarding the dopamine agonists.

[Joolsg in reply to JunieBJones]

Thousands of cases.In the USA there were huge class actions & billion dollar settlements in around 2009-2014.

As a result, drug companies put warnings on all med leaflets about Impulse Control Disorder. They also put warnings about augmentation.

Here in the UK hundreds have successfully sued their GPs and neurologists for failure to warn about ICD. NHS Resolution settled out of court in most cases but there are many cases reported in the legal journals.

So far, no legal case has been brought in the UK for failure to warn of the high rates of Augmentation/failure to treat augmentation properly

But- a test case might be brought soon. Especially as the research and evidence is now more readily available and doctors have a duty to keep up to date on treatment.

[Doped]

Thanks Joolsg, quite honestly right now I wouldn't have the time or energy to take something like that on but perhaps it could be a consideration on down the line. I can barely keep my eyes open after 6pm when I begin my series of cat naps, I save a huge amount of money on my non existent social life! I will be having a phone consultation with the neurologist soon and will let him know my opinion, I'll ask why he missed the opportunity to take me off the drug at least three years ago when I was clearly augmenting!

[Ischmael]

I curious, why did you come off the patch? I’m doing great with it and my Dr wants to keep me on it. Finally something that actually works! Absolutely no breakthrough symptoms after dealing with RLS for nearly 20 years! So many sleepless nights . Good luck to you

[Merny5 in reply to Ischmael]

Hello Ishmael, The patch ( and other Dopamine agonists ) work and then it stops working. You have to keep increasing your dose in order to get relief. Please read about augmentation on this website and read the hell that we have been through due to this drug. It is a horrible medication which I personally feel should be banned world wide. Sorry to be negative, but it’s true!

[Ischmael in reply to Merny5]

That’s how I felt with ropinirole. Thank you for the information. I’ve been on it 2 years now with no breakthrough symptoms and no increase in dose. I’m also taking it with Gabepentin. I hope I continue to do well on it.

[Doped in reply to Ischmael]

Because it made my symptoms even worse, more extreme, more areas and daytime as well as nighttime, bus and plane journeys were almost impossible

[SueJohnson in reply to Ischmael]

Who is your doctor?

[Caperry]

I understand all of this completely but if no opiods available and other meds don’t work what are we supposed to do?

[SueJohnson in reply to Caperry]

Did you ever go to the Quality Control Center at Vanderbilt that I recommended to you. They will prescribe opioids.

[Caperry in reply to SueJohnson]

Yes I see dr walters there now! Opioids are last resort and then a lot of drs still won’t prescribe!!

[SueJohnson in reply to Caperry]

So was your comment just in general, which is certainly true, rather than you specifically?

[Caperry in reply to SueJohnson]

Yes in general! But I believe most drs won’t prescribe opiods

[Niewiem in reply to Caperry]

best question ever Caperry, what than? But there is always something off labels, I'm gona mention just one ldn, works 50/50 but it's better than nothing, cheers,n

[Caperry in reply to Niewiem]

Which off label is it?

[Niewiem in reply to Caperry]

LDN (google it)

[CarnivoreTony]

Neupro didn't work that well for me, so I switched to Methadone. That worked perfectly but then I moved to a country where I can't get it. After going through hell for a while, I discovered that the carnivore diet got rid of my RLS. I'm extremely sensitive to nightshades and wheat.

[Niewiem in reply to CarnivoreTony]

pls. do tell more about carnivore diet

[Bat3353]

Who after 15 years I’m also getting off the patch I was on 3mg I first cut it diagonally in half for 2 weeks then in 4 pieces today officially my first full day without patch I feel so happy knowing I’ve kicked the habit I hope it doesn’t act up again now I have to work on the 3mg ropinorole pill I’m going to wait two weeks before I tackle that task and probably cut it in pieces also I was told after getting of ropinorole I have to wait 30 days to use gadapetin I wouldn’t of been able to do this with the kind advice of all tho use beautiful members on this group

[Merny5 in reply to Bat3353]

Good luck!!

[Ischmael in reply to Bat3353]

I went through augmentation on ropinirole so now on the patch. Hoping for the best. So far so good!

[4Curiousosity]

interesting. I didn’t realize about augmentation with Nuepro. I’ve taken Buprenorphine on & off for 20 years due to chronic pain. When I stopped the RLS was crazy bad. I learned that the Buprenorphine was treating my RLS so I went back on a small dose (1/4mg or less daily). I would like to get off of it again, but gabapentin does nothing for me and I’m afraid to take Mirapex.

[Doped in reply to 4Curiousosity]

Whatever you do do not touch Mirapex, it's another dopamine agonist and will also lead to augmentation. You are lucky to have found a treatment that you can tolerate and that works so well for you. Good luck 👍

[SueJohnson in reply to 4Curiousosity]

As Doped said - do NOT go on Mirapex.

[SueJohnson in reply to 4Curiousosity]

If it ain't broke, don't fix it.