Has anyone used a Rotigotine patch for restless legs?
Rotigotine patch: Has anyone used a... - Restless Legs Syn...
Rotigotine patch
Written by
Bridall
To view profiles and participate in discussions please or .
Read more about...
54 Replies
•
youtu.be/Tz7g9sxS0_I?si=WjP...
This video explains exactly why you SHOULD NOT agree to the Rotigitone patch.
Avoid, avoid, avoid.
UK neurologists are under the mistaken illusion that the patch doesn't cause augmentation. IT DOES.
Everyone on this site who has used it experiences drug induced worsening pretty quickly and it's even more hellish to get off than Ropinirole or Pramipexole.
Hi I went to the doctor today & he said my ferritin in July was 60 although it was 120 in 2022. My haemoglobin is 126. So having another ferritin test.
Hopefully your doctor will not suggest Rotigitone.RLS-UK now campaigns against these drugs & follows the Mayo Clinic Algorithm and new guidance from the American Academy of Sleep Medicine, which relegates ALL dopamine agonists to end of life scenarios.
Your serum ferritin needs to be above 200ųg/L ideally.
I thought he suggested Rotistitmine but I can’t find anything on it.
There is no drug for RLS called Rotistimine.The only RLS drug beginning Roti is rotigitone, very popular with UK neurologists BUT they're all wrong.
It most definitely helps at first, but then causes very severe augmentation, which you definitely do NOT want.
And when it inevitably happens, the doctor who prescribed it will 'disappear' & say it's not supposed to happen, or that it's the progression.of the disease. All nonsense.
Too many patients experience severe worsening on Rotigitone and then their neurologists don't help them get off the poison.
We need written contracts.
Any UK doctors prescribing this Rotigitone or Ropinirole or Pramipexole has to agree to prescribe low dose opioids, like Buprenorphine, when RLS inevitably worsens, and even to pay for residential rehab to help their patients get off these drugs safely.
They'd soon read the evidence and research papers and stop prescribing them.
Love the idea of a contract. 😀
Imagine? They'd soon stop prescribing them like sweeties/candy!I spoke to Angharad Vaughan this afternoon and she's been very busy bringing legal cases against UK doctors for failure to warn about ICD.
I hope she keeps doing it.
Money is the ONLY way they'll listen.
Absolutely true.
Oh yes, so do I !If I am ever offered these pills/ patches that were designed by Satan, manufactured by demons and prescribed by imps:
I will write a contract.
They will flee back to the Seventh Circle in a flurry of legal exorcism !
My laugh for the day "they will flee back to the Seventh Circle in a flurry of legal exorcism !" 😀😀😀
I'm going to see chris murphy at Manchester in September, if he prescribes buprenorphine ,how can l get it ,my doctor says there's no way as its on the red list. I've had augmentation with pramipexole , pregabalin and now rotigitine,what can l do???
This information is from Joolsg - find nearest prescribing area where it isn't red listed and find a surgery that prescribes opioids and ask to register at a GP. NHS rules allow you to register with any surgery as long as they don't have their own restrictions on who can join and they agree to take you.
or : Get neurologist to issue a prescription on a green form & fill it at local chemist
Don't let Dr Murphy prescribe Neupro which is another dopamine agonist.
Thanks very much,Sue, any more detail on green form,( procedure etc), thanks
No - I am in the US so just repeating what Joolsg said. You can message her and ask or reply to one of her replies below.
While you are waiting foe the test and the results you might as well start taking iron
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Assuming your new test is the same, ask for a new blood test after 3 months.
Hi Joolsg, I've been tapering down from my 2mg Neupro patch for almost 3 months, it's been awful but I'm now on .5 so I'm down three quarters of the original amount. The video says you can't reduce the patch but I've been cutting it and recently read that that's not a good idea as active compound may dump into the system too quickly instead of the steady 24 hour release. Any thoughts on this?
⁸Many people cut the patch and do what you have done. It is definitely possible.
The instructions say not to, but many members on here have done it.
As you're nearly there, you may as well keep going.
The alternative is to switch to equivalent dose of normal release Ropinirole and drop 0.25mg pill every 2 weeks.
As you're at .5 you can start adding gabapentin or pregabalin now as they take 3 to 4 weeks to be fully effective and they then don't start to cover the RLS until about 3 weeks after the last dose of Rotigitone.
Also ensure serum ferritin is above 200ųg.
Have a look at Dr Berkowski Buprenorphine study. He uses Buprenorphine to help get patients off dopamine agonists without the hellish withdrawals.
neurologyadvisor.com/report...
Thank you for the reassuring advice, I feel confident now that what I'm doing is right and I'll plough on until I have this awful drug out of my system
You have done so well to get this far. It is horrendous.But it is well worth the pain. Once you're through withdrawal, you'll feel so much better.
I switched to tramadol and gabapentin. Then Oxycontin and pregabalin.
These work for many, many people.
Sadly, not for me.
But Buprenorphine has stopped ALL my RLS and I sleep 8 hours every night.
I can sit through 4 hour cinema shows, 8 hour flights. Zero RLS.
There is a treatment out there that will work for you. Good luck.
The equivalent dose of ropinirole is .75 mg so if you don't want to suffer more than necessary it will take you 6 weeks before you are off it. Or using the patch cut the remaining one in 3 parts and reduce by 1 part every 2 weeks.
Thanks for that Sue, I think I've been over eager to hurry things up and it's been backfiring so I'll slow the tapering down and hopefully in 6 weeks I'll have finished with dopamine agonists for good.
I agree with Joolsg. It is a dopamine agonist like ropinirole and pramipexole.
Don't go on those patches, says me from experience.The augmentation is hell.
Yes, it is pure torture!
Hi, this patch (Neupro in the USA) is a life saver. It is expensive but I do not think I can live without it. It takes away all the discomfort, especially at night. I would recommend it!
It's just a matter of time before you will suffer augmentation on Neupro (Rotigotine). And then it will be hell to come off it. If you come off it now it will be a lot easier. It is a dopamine agonist (DA) like ropinirole and pramipexole. Doctors will tell you that you are less likely to suffer from augmentation on it but that has been proven to be wrong.
DAs are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations.
I know you won't listen to me because while they work they are great. When you finally decide to come off it which will probably be when you suffer augmentation, post back here and we can help you.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
I respect your recommendation. After suffering from RLS for years and using all different kinds of medication, the patch was a life saver for me. I did not experience any augmentation for 2 years placing them on my shoulder blades. This is my experience and it is working for me.
Also, I saw some people complain about augmentation. I put the patch on my back, on my shoulder blades. I did not need to change to dosage for two years now.
What size is it?
4mg
3 mg is the max so you are already by definition augmenting.
There are patches in 2, 4, 6, and 8 mg sizes. I started at 4 mg and I am still using 4 mg size patches. I have not experience any augmentation while using patches.
Who is your doctor and what city do you live in?
Ms. Johnson are you a doctor or a nurse?
No. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others. Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.
Have you used the patch?
No
My experience comes from using it continuously for two years. While I respect your comments about the patch, we all know that all RLS medications can cause augmentation. In my advanced RLS case the patch really helped me. Best regards.
It's obviously your choice and I wish you the best but I must correct what you said. Only the dopamine medicines cause augmentation. Gabapentin, pregabalin, dipyridamole and opioids with the possible exception of tramadol do NOT cause augmentation.
Ms. Johnson, I know you have the best intentions in heart and you are trying to help. Please understand that I had tried everything including pregabaline. They all failed me until I found the patch. There might be out there people who are in the situation I was in two years ago. My message is for them. A last resort that has been helping me for two years.
I've suffered for 17 years with severe refractory RLS and have been on all dopamine agonist medications with the same result - severe augmentation, with Neupro (rotigotine transdermal system) being the worst, pure torture. It worked great for a long time and felt it was the greatest until I had to keep increasing the dosage, eventually maxing out and dealing with severe augmentation.
I wish you the best and if it's working for you that's great but I felt the same way for a long time and then disaster.
RLS.org is a great site with a lot of information and recommendations.
Best wishes!
Hi, I’ve recently been taken off Ropinirole and started with rotigotine patches. I’ve found them better during the day, but still having an issue at night, waking up after 30mins to an hour. After that and with help of Co-codamol I normally sleep for most of night. They have seemed to make me tired…unless that’s just lack of sleep! Also currently building my iron (ferritin) levels in the hope that helps. Only been on patches for around 6 weeks so will see how I go.
Welcome to the forum. You will find lots of help, support and understanding here.
I saw your other reply where you were on 3.5 mg ropinirole and they were no longer helping. You are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
You were probably switched to a 3 mg rotigotine (Neupro) patch and your doctor may have told you they were less likely to lead to augmentation which has been proven to be false. And at 3 mg you are on the maximum amount.
It won't take very long until that won't work either. I strongly suggest you get off it. 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. Your Co-codamol will help but cocaine is a weak opioid. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations.
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 Neupro although it won't be fully effective until you are off ropinirole or Neupro for several weeks and your symptoms have settled. After you are off ropinirole or Neupro for several weeks 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks very much for your advice Sue, I’ve been really struggling since I came off the Ropinirole and changed to the patch. I came Off Ropinirole ‘cold turkey’ (which is what I was told to do) I didn’t sleep at all for 2 weeks and felt really ill. Since using the patch I go to sleep, but wake up within the hour, legs dancing all over the place. After then taking Co-codamol and sometimes Ibroprofen I normally manage to get a few hours sleep…usually 5-6 hours so not too bad. I will talk to Doc again and come off this patch…try the solution you suggested. I am over 65, so that will affect the dosage. I’m also on medication to increase my ferritin levels and a diet aiming to increase potassium. Thanks again, Steve
Taking you off the ropinirole cold turkey is criminal. How much ropinirole were you on and what size is the patch?
I was on 3.5mg Ropinirole. I’m now on 3mg rotigotine patch, which I’ve been on since 30th July this year. I am also taking tablets to increase my ferritin levels. Been told my potassium levels are better, but need a blood test in a months time. Waiting to hear how my ferritin levels are!
That's the equivalent of 4.5 mg of ropinirole . Obviously the patch is not agreeing with you since that increase should have stopped your symptoms. I would suggest going back on the ropinirole. You could try 4 mg or 4.25 if that doesn't work but you may have to take the 4.5 mg. You want you symptoms to stop and stabilize for a few days before you start reducing.
Thanks Sue, will look at all you’ve advised and make some changes…let you know how I get on later.
Sue, forgot to say - my Ferritin level was 40!
That is low. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
If you are taking a different iron, check the elemental iron listed. It needs to be at least 75 mg.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion.
Since your ferritin is so low do ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you doctor won't prescribe one you can also get one privately by paying for it, but it costs around £800.
Hi Sue, I’m on 200mg Ferrous Sulfate tablets. I take one a day each morning. I do have a blood thinner (Clopidogrel 75mg - Once a day) I don’t take turmeric. You are teaching me a lot at the moment. I’m going to print out the info as there’s a lot to sort. Thanks again for your advice, it means a lot. If I can work towards better control of my RLS, even if it takes months, at least I have something to aim for! Steve.
Since you are on a blood thinner you may know this but in case you don't: Don't take Vitamin K as a supplement as it can interfere with blood coagulation and avoid eating large amounts of vitamin K-rich foods . Also don't take Ibuprofen nor aspirin. You should not use CBD oil with blood thinners. Be careful about drinking oolong or many other types of herbal teas if you are taking a blood thinner as a lot of them have blood thinning properties and could cause a bleed when added.
Clopidogrel may or may not make RLS worse. However there is a blood thinner that may help RLS - dipyridamole. You might want to discuss this with your doctor.
It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
Not what you're looking for?
You may also like...
Rotigotine patch
Hi everyone..
I haven't written on here for so long but I still have restless legs and PLMd..
which...
Rotigotine patch
Hi everyone, i think i know the answer to this but care for opinions…
My Dr after ive complained...
Rotigotine patch allergy
I am on the Rotigotine patch which is working but I'm having an reaction to the patches . When...
Cut Rotigotine patch in half
Hello I cannot find 2mg Rotigotine neupro patch, but I found 4mg, can I cut it in half?
Side effects of Neupro transdermal patch rotigotine
Hi. I was prescribed this patch by my consultant. I'm on other medication for my fibro. On my last...
Related Posts
Rotigotine
Anyone struggled to get the rotigotine skin patch?
Rotigotine Patches
Rotigotine patches 
patchModeration team
KaarinaAdministrator
