Please do NOT let any GP or neurologist switch you to the Neupro patch (Rotigitone). It WILL cause worse augmentation than Ropinirole or Pramipexole and the experts see it happening every day. Neurologists who do not treat thousands of RLS patients a year seem to think Neupro has less risk of augmentation. That is not the case.
How many people have posted on here that they switched to the Neupro Patch and their RLS has become worse.
I choose to follow Dr Berkowski and the overwhelming anecdotal evidence on this site. Neupro WILL cause severe worsening of RLS and getting off it will be hellish.
I am one of the many who had a miraculous ‘cure’ with the Neupro patch and 15 months later the worst torture augmentation set in and it took me nearly 5 years to escape from the horrendous symptoms and suicidal feelings.
My experience the same as Kakally's and unfortunately, I am still paying the price. I have not been near Neupro in 7 months but I truly believe it is not done with me yet.
Well done Julsg needed repeating, GPs love the patch as it’s slow release but it sets a time bomb ticking, you won’t hear it until it’s too late, I know as I was prescribed them as many have been so please resist your GPs and Neurologists.
It has to stop. Neurologists just prescribe then disappear, leaving a trail of suffering in their wake.It's why Rosie Kelly died. Her neurologist prescribed the patch & when augmentation quickly hit, he had no idea what to do. He referred her to a sleep clinic, but she died from a bleed on the brain after a fall, trying to walk, and walk while exhausted.
It’s hard not to cry all the time. I am so sorry such a simple thing it could be. It just takes coordination between the three huge corporations that run everything! Government,pharmacies and insurance companies, I wish we could have them come together to help and solve this .🥹
BPN28 has just joined the forum and, yet again, another negligent UK doctor has switched her to the patch from Pramipexole. Sadly, GPs believe UK neurologists when they tell them to switch augmented patients to the patch.
It has to stop.
I know that even the 'decent' UK neurologists, like Dr Chris Murphy, Dr Robin Fackrell, Dr Guy Leschziner are STILL prescribing Neupro.
Until RLS-UK can persuade NICE and NHS to listen, the poor treatment will continue.
I am sad to say that Dr. Chris Murphy has put me on Neupro Patch too, switching from Ropinirole. He was recommended to me on this forum. I am currently on the 2mg patch.
If he honestly used the term augmentation, he is more behind research than I thought.
Gabapentinoids often do not work when a patient has experienced drug induced worsening ( augmentation) on dopamine agonists, and they sometimes cause tolerance ( the need to increase the dose to achieve previous cover) but they do not cause worsening of RLS symptoms, like the dopamine agonists.
I understand your concerns. We have had people ignore our advice before and return 3 or 4 years later in a terrible state. When we ask them why they ignored our advice ( based on the latest evidence based research by the world's top experts) they understandably say they could not believe that forum members would know better than top UK neurologists.
I was like you 8 years ago. But I decided to trust the people on this site and I refused to switch to Neupro when the UK top RLS expert, Professor Ray Chaudhuri told me it didn't cause augmentation.
I started researching and have now read hundreds of RLS scientific research papers and had a paper published in The Lancet.
I am now completely RLS free 24/7 and sleep over 8 hours every night. I hate to see the suffering of thousands of patients, badly let down by ignorance and negligence. Because that's what it is.
So, I suggest you watch the webcasts by Dr Berkowski on youtube. Read the Mayo Clinic algorithm. Read RLS-UK website.
Read all posts on here headed ropinirole/pramipexole/augmentation.
And then decide whether you are willing to continue to suffer severe RLS.
Dr. Murphy did say Gabapentin and Pregabalin also caused augmentation, his exact words. It's very disappointing when you spend the equivalent of a nice piece of furniture and travel far afield for professional advice to discover that the advice given could be outdated and/or dangerous. I will contact him soon and try to get off the patch. To be fair to Dr. Murphy, he is trying me on Rotigotine (Neupro) patch as a first stab at a solution but mentioned plenty of other options I can try as well if it doesn't work out, including Gabapentin, Pregabalin, Buprenorphine, and even Cannabis. I'm sure he will be open to listening to my concerns.
And I may have been the one to recommend him, although at that time I didn't realize he would prescribe Neupro.
Are you still on it? If so I suggest you come off it and see Dr. Murphy and ask to prescribe gabapentin or pregabalin.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount which would be 3 ropinirole. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
I know I gave you this before but it has been awhile. To come off ropinirole or the patch reduce by .25 mg (1/6 the patch) every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Start it 3 weeks before you are off ropinirole or the patch although it won't be fully effective until you are off ropinirole or the patch for several weeks and your symptoms have settled. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Just as an addendum to my previous comments, it could be that Dr. Murphy was reluctant to prescribe Pregabalin or Gabapentin because I told him that my job (software engineer) requires a sharp mind. Do these drugs have side effects like making you less able to think clearly? I know, sleep deprivation has the same problem so it's debatable which would be worse! By the way, he suggested my symptoms might actually indicate something slightly different to RLS. He said they indicated "Painful Legs and Moving Toes" (PLMT) Syndrome.
They can in some cases but most people don't have that problem. I certainly don't. One should give it 3 to 4 weeks to see if side effects go away. The nice thing is that unlike DAs it is easy to come off them without any withdrawal effects by reducing 100 to 200 mg of gabapentin or 25 mg of pregabalin every 2 weeks.
My neuro made me go through a list of 5 or so drugs saying if they didn't work he would 'allow' a Buprenorphine trial.
I trialed them dutifully, including the Nupro, knowing that was the path to getting Buoprenorphine.
This neurologist should know, but still would have let me carry on taking Nupro if I hadn't told him it had weird side effects. It took six months before I was prescribed Buprenorphine.
It seems to me that many of them know Buprenorphine works but they are told to prescribe only if no other choice. They are scared and feel unable to rise up and prescribe off label.
This has to change. This insidious disease needs urgent consideration. People are feeling scared and hopeless.
Keep trying everyone. Buprenorphine can be prescribed. You just need to find the right medic, and be prepared to be assertive, or get someone to help you if you can.
P. Message me if you want the name of the neuro that eventually allowed me to have them.
Tell me something, from what i have read, the treatment for Chronic RLS is to use gabapentinoids as first line and then opioids for refractory cases. DAs only for short periods and under supervision to avoid the risk of augmentation and ICDs.
I was wondering how many years or how long in general does the average RLS patient experience relief using gabapentinoids and opioids? Because of the limited ammo I fear eventual loss of efficacy followed by a life of chronic insomnia.
I understand that I am thinking too much but please allay my curiosity as I am anxious. I couldn't really find any concrete figures online.
I can't give useful research info on gabapentinoids, but there is Dr Winkelman's Opioid register, which is showing that opioids do NOT cause tolerance ( the need to increase the dose to maintain previous coverage).I have been on the same dose of Buprenorphine for over 3 years. Shumbah for over 5 years.
I increased Ropinirole after 2 years and then after 4 years.
There are many members on here who do well on gabapentinoids and I'm sure they'll reply to let you know how long they've been on the same dose and whether it has covered their symptoms.
Bear in mind that gabapentinoids do not work for all RLS patients. Particularly if they've tried dopamine agonists beforehand.
You might eventually need to increase gabapentin but only by 100 mg after a number of years and then again after a number of years but since you can take up to 3600 mg or 600 mg pregabalin it is extremely unlikely you would ever get to the maximum,
Hi , I'm new to this site so briefly I suffer from extreme rls and have tried most of the standard drugs including Neupro. I'm female and 68 years old. I started on 1mg and about two years ago increased this to 2mg. I thought my worsening symptoms were due to the drug 'wearing off' , I had no idea the patch itself was the cause of my intolerable symptoms. I started cutting the patch gradually 10 weeks ago and I'm now down to about one third but barely sleeping and incredible wound up, how long will this last!!!? By the way because of the side effects of brain fog and sleepiness after I started using it I decided early on to only wear the patch between 6pm and 8am so I had a bit of a head start but it's still torture!
Here's the withdrawal schedule from RLS-UK site.Withdrawal is hellish for nearly every patient.
RLS becomes very severe with each dose reduction and then extremely severe for 2 to 3 weeks after the last dose.
Only a few people avoid it.
Most people need a low dose opioid at each reduction and during the month after the last dose.
You should ensure your serum ferritin is above 200ųg, so get full iron panel blood test.
You usually start gabapentin or pregabalin 3 weeks before the last dose of Neupro. It doesn't help the withdrawal, but it gets your body used to side effects and gabapentinoids need 3 weeks at full dode to be fully effective.
Low dose, long half life opioids ( methadone and Buprenorphine) are the most effective opioids and can drastically reduce withdrawal symptoms.
But you must get off Neupro completely, otherwise augmentation breaks through.
Do consider a new post, as not many people will see this. And complete your Bio so we know which country you're in and all current meds you take.Look at all posts headed augmentation, Ropinirole or Pramipexole and you'll find full replies from members setting out how to withdraw.
Withdrawal was the worst experience of my life, BUT I'm so glad I did it as I now have zero RLS, ever, and sleep 8 hours every night. So keep going and use RLS-UK website for information.
There are printable help sheets on iron therapy and withdrawal.
I agree 100% with Joolsg but let me add a few things. One of the reasons you are suffering so is you are reducing the Neupro patch too fast. This is what I normally suggest. You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks.
I suggest you go back up to a dose that does not give you such horrible symptoms and let everything settle before starting to reduce again as described above. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch are no longer the first line treatment for RLS. Gabapentin or pregabalin are.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole or the patch although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Thanks for your detailed response, I will slow down my neupro reduction, I think I've been too enthusiastic and impatient to get off it in a hurry but it's backfiring! I will read carefully through all your suggestions and try some to see if it helps. Thanks so much, it's wonderful to know your not the only one, I've never actually met anyone else with this awful condition.
Thanks for that, I'm so tired at the moment that I can't think straight enough to plan the next move. I would love to find a natural way to deal with the symptoms as many drugs don't agree with me. I had an iron infusion last December but now my ferritin is reading 500 which I gather is quite high but still no relief from the rls. I suspect that the dopamine agonists will override everything else so until I'm off it I won't know what's what. I'm surprised I'm still having day time symptoms and completely exhausted all the time, is this withdrawal?
Your D1 dopamine receptors are screaming for their hit of dopamine.
You're correct. It is withdrawal and RLS will be VERY severe.
Until you get off ALL DAs, the iron infusion won't help much. And experts believe permanent damage to dopamine receptors stops iron being taken up in the brain.
None of us would! Nor would the tens of thousands who developed Impulse Control Disorder. They've lost homes, jobs, relationships to gambling & overspending caused directly by poisonous dopamine agonists.
I don't think anyone who hasn't experienced rls can even begin to imagine how awful it is and to think one of the treatments for it actually make it worse, it beggars belief!
I completely agree with you! Over 10 years ago, a neurologist swore the Neupro patch would be “life changing” for my RLS. Well, it definitely was. She prescribed a 4mg patch. It did relieve my symptoms, until it didn’t. A movement disorder neurologist tried everything, including massive amounts of Gabapentin, Horizant, , Lyrica and finally Methadone. Methadone has worked for the past 8 years with 2 increases in my dosage. I now take 7.5mg 3x daily. He also weaned me from 4mg Neupro Patch to a 1mg, but after 8 years, I cannot get off the patch. It’s frustrating and makes me very MAD that the dr who prescribed the patch initially, knew NOTHING about RLS and sentenced me to a life on the damn thing!
That is why I am beginning to loathe most neurologists. I hate their ignorance and arrogance and their refusal to read the latest research and evidence.
I do hope you eventually manage to get off that last 1mg of neupro. RLS augmentation tends to break through even buprenorphine and methadone. But ask to switch to 4 x 0.25mg slow release ropinirole first and reduce by 0.25mg every 2 weeks. You could ask for tramadol or codeine to take at each reduction to settle increased RLS. And ensure serum ferritin is above recommended RLS levels.
Actually you want 1.5 mg ropinirole to equal the 1 mg patch and you don't want the slow release ones as they can't be cut. Then as Joolsg say reduce by .25 mg every 2 weeks. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
There is a RLS study currently being done showing DA will perpetuate the symptoms if continually taking them. .5mg of requip works for 6 months then your symptoms get worse so the dose is increased. At 1mg requip now works for 3 months so your dose is increased. 2mg now and your symptoms are 24/7 on some days with requip only working for a few days/hours. Up the dose to 3mg. As the dose increases the effect of the med decreases. This happened to me. I weaned my self off of requip and will be taking 100mg of tramadol instead. I feel so much better. I am hoping to decrease the tramadol over time. I think to myself...maybe my RLS was all drug induced and I never really had it.
I was on Ropinirole for 20 years 😔. Now on Rotigotine Patch and being told it is just as bad, if not worse. So many years of potentially needless, medically induced suffering, it's quite upsetting really.
It is criminal.Just look on here and on every RLS help forum.
The ONE thing that is happening EVERYWHERE is severe augmentation on dopamine agonists.
It has been known about for well over 10 years.
The US doctors see thousands of RLS patients a year. A UK neurologist will see possibly 50 RLS patients a year. So the US doctors kept seeing the SAME thing. Every patient getting much worse on EVERY dopamine agonist.
That is why they got together to write the MAYO Clinic Algorithm to try to stop further suffering.
Now Dr Berkowski has gone further, and he and his fellow sleep medicine doctors have 'banned' DAs. Under the new guidelines by The American Sleep Academy, DAs can only be prescribed in 'end of life scenarios'.
Dr Jose Thomas, a sleep specialist in Wales, is the ONLY UK doctor who taught himself RLS after realising that nearly all his patients had RLS. He went to the USA to learn from the top experts and his team stopped prescribing DAs over 10 years ago.
I told my MS neurologist all about DAs and what I had discovered when going through withdrawal from Ropinirole. She knows I've studied it in depth. Her team no longer prescribe DAs as a result.
It is a worldwide medical scandal.
The producer of Mr Bates v the Post Office is now working on a drama documentary about dopamine agonists. I've given her the names of about 15 people who have lost a fortune gambling.
Their neurologists did NOT tell them of the very high risk of gambling caused by DAs.
Did Dr Murphy mention Impulse Control Disorder? Have you ever gambled or spent or developed out of character behaviour?
Join RLS-UK and spread the word.
We have to advocate for ourselves and stop doctors prescribing dopamine agonists.
Dr Murphy did ask if I knew about Control Disorder, but I only know about it from here and research I have done. I was never told about it when starting Ropinirole back in 2017. I do have out of character behaviour which I'm now wondering if it because of this drug thankfully no gambling.
I've been on it for a while and so far its given me some respite. Trouble is I've mentioned your advice but was told, and these are the exact words.. I can offer no alternative. So I'm stuck with things as they are.. I'm not sure GPs really get just how debilitating the condition is..
There ARE alternatives. They're set out in NICE guidance. Gabapentinoids are listed on NICE.
And obviously low dose opioids are very effective, especially after damage from dopamine agonists. But you need to see a neurologist usually, to 'persuade' your GP to prescribe correctly.
In 2018, my sleep neurologist and I came up with a cocktail that keeps RLS mostly at bay: gabapentin (1800 mg), clonazepam (1.5 mg), Neupro (3 mg), and slow release iron (45mg 3 times a week, + vitamin C). Methadone makes it worse. I know I’ll have to endure the hell of getting off Neupro sometime (I did it once before) - I will never again choose to take it.
On another topic, arts can help us cope, forge a sense of community. I wrote two laments and an anthem for all of us, now on a Youtube playlist: tinyurl.com/RLSSongs. Give them a listen.
You can do it and then the gabapentin will actually work as it doesn't help much while you are on Neupro. You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
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