Hi all. Things are bad enough and nothing else is being effective, so I’m trying Neupro for the first time. I’m well aware of the risks of augmentation but you have to do what you have to.
For those who have taken Neupro or have a good research study on the issue, at what dosage was it effective and for how long? Did you need to increase the dosage after some time?
Thanks.
What about pregabalin? You mentioned you were on 300 mg pregabalin 1 month ago. Did you try increasing up to 450 mg?
Thanks Sue. I did try Pregabalin on its own at 300mg with no effect so doubt that 450mg will help. Plus, doctor and drugs.com says 300mg is the max single dose. I’ll confirm that at my next appointment though.
The reply I wrote to you also disappeared. We had this discussion about 450 mg being the max single dose one month ago and you included an article written by Dr Buchfuhrer showing that 450 mg in the evening was OK with a max daily dose of 600 mg. Print out and show that article to your doctor.
Hi, again, ircam2112. FYI: My initial experience with pregabalin (titrated up to 300 mg daily) was not favorable. However, in hindsight, my current doctor and I found that the lack of efficacy might not have been due to the pregabalin, but instead might have been due to the concurrent discontinuance of pramipexole (dopamine agonist) and what appeared to be Dopamine Agonist Withdrawal Syndrome.
Last week, my new doctor recommended pregabalin at a conservative dose of 50 mg each evening. Per SueJohnson and others, it may take some time before pregabalin takes effect, but I am giving it a go.
If you are taking or discontinuing any drugs that might have negated the potential positive effects of pregabalin, you may wish to discuss again with your doctor.
Be well.
Hi Ircam, some one should be along to answer your question soon. In the mean time I found this pubmed.ncbi.nlm.nih.gov/112... Man oh man, I never realized how different PLMD can be from RLS. Melatonin almost always makes RLS worse.
And I believe your PLMD is VERY atypical. Studies have shown that clonazepam only helps PLMD by lessening arousal, it doesn’t do much, if anything, for the PLMS. And when untreated you have involuntary movements all day long… when at rest. Sounds more like Myoclonus which you may have been predisposed to because of a spinal injury and celiac disease?
Either way, I believe the treatment is the same for all these movement disorders - meaning more dopamine or in your case seizure controlling drugs as well.
You might find this interesting too: healthunlocked.com/rlsuk/po... Ferrous Bisglycinate stops my RLS in one hour or less so I am like GillRLS. My healthy ferritin of 100+ doesn’t seem to do much for my RLS/iron deficient brain
Man, I wrote you a long reply and it disappeared somehow. Maybe I refreshed the page by mistake.
Anyway, yes, because my PLMD or myoclonus was caused by a rapid withdrawal from an antidepressant with affinity for the dopamine system, it likely differs in some respects from PLMD and has been particularly difficult to control as DA’s have not worked at all by themselves in the past. I’m hoping a Clonazepam/Neupro combo will work, for a while at least.
Thanks for the links. My circadian rhythm appears to be almost completely reversed (sleeping 7am-2-3pm) so I may give melatonin a shot once I know how Neupro is helping. But, the shifted schedule could also be my body’s way to adapt in a positive way.
Melatonin makes RLS worse for most.
Another one to try is dipyridamole. It has helped some people on this forum and another forum I am 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... movementdisorders.onlinelib...
I did try Dipyridamole for 4-5 weeks to max dose. Didn’t help 
I was excited when I saw the results of that study. I hope someone tries to replicate the results as they almost look too good to be true and I’d think we’d be hearing more about it if it was helping as much as the study found. I’ll have to take another look at the methodology at some point.. Hopefully some others are having better luck.
Hi Sue, when I googled dipyridamole it said that it is being withdrawn from the UK . The manufacturers said that it was purely for 'business reasons'. Have you come across this too?
It is still listed under medicines.org.uk/emc If your enter it in the search box you will find it there. Also nhs.uk/medicines/dipyridamole/ Also there are others.
There have been c. 10 different authorised companies involved in the manufacturing of different strengths and forms of Dipyridamole for the UK prescription market; one did drop out of the market for business reasons in 2015, and it's possible that someone else has dropped out more recently.
There was a shortage of Dipyridamole 100mg tablets in the UK in November and into early December, but this was expected to ease a week or so ago.
And what about opioids and kratom, cannabis, CBD or THC (Delta8) gummies? You augmented on ropinirole before I believe - didn't you? If so, it won't be long before you augment again. And you know how hard it is to come off it. If I were you I would exhaust all other possibilities first. Also are you taking any other medicines or OTC supplements. Many of them make RLS worse. If you list them here I can check if any of them make RLS worse and perhaps give you a safe substitute.
Yep, tried them all. Opioids (50mg) + Clonazepam (2mg) + Requip (4mg!!) was the best combination I’ve ever had. went back to work full-time, had energy, my old self! But, switched doctors and now doctors are stingy with opioids at best and, in combination with Clonazepam, nearly impossible. If the Neupro doesn’t work alone at 3mg, I’m going to press for adding Clonazepam and Pregabalin. If tolerance develops, it may be that every year or so that I’ll have to stop one for a while until my tolerance to it decreases then reintroduce it - difficult to determine which one to stop, when to restart, etc.. Will make for a few rough months every year but….what are you gonna do right? I see my PC on Friday and am going to ask for an IV iron though my levels are fine 130 or so, 40% sat I think but, never know.
Can you go back to the doctor you switched from?
Unfortunately, no as we moved to a different state in the US and when I was on those it was pre-opioid epidemic. I’m going to ask my neurologist in January though if Neurpro with low-dose Clonazepam isnt getting it done.
Please just try pregabalin along first. You've nothing to lose.
Please think about trying the oral ferrous bisglycinate before an infusion. You can buy on Amazon -called Gentle Iron by Solgar. The smallest bottle is $10. If you take the iron when you’re symptomatic then you’ll know within an hour if the iron will provide you with any immediate relief. If it doesn’t then you can still finish the bottle and see if getting your ferritin closer to 200 will benefit you. Then consider an infusion.
I’m not sure if you were able to open my second attachment but here’s what GillRLS wrote about her experience and that of her daughter. The below post is about 7 years old but as of a year ago it was still working for her:
“About four weeks ago I read on here a post about gentle iron. After a really bad session of RLS I thought it was worth a try. I also went on a link to an article about the anemic brain. I bought some and waited for my legs to start . Sure enough that night they started, just as a film was getting interesting. I took a iron tablet and about 30 minutes later watched the rest of the film. I have since taken one tablet every night and have not suffered RLS. Just to satisfy any doubt I have since knocked the iron off and RLS returned the next day. So back on the iron now. The other amazing fact is my daughter has dystonia and also tried the iron , after learning about the anemic brain theory . She is so much better and has now come off her prescription drugs. I can't thank this site enough, and thank you to all the people who take the time to share there information.”
Good morning, ircam2112. Over a decade ago, I briefly tried the Neupro patch. Sorry that I do not recall the dose so I can't reply to that portion of your inquiry. I recall that it was expensive; had it worked, I might have continued. However, in my case, not only was it ineffective, but it "burned" in the area of application. The burning was so intense and regular, that I soon exhausted portions of my body to which I could apply the patch.
Oh: the limited, initial supply of Neupro patches had been gifted to me by one of the many "sleep expert" neurologists with whom I had consulted over the years. As is my custom, I read the accompanying literature and did some independent research. Fast forward to my next visit with the "sleep expert" neurologist. Here is an except of our conversation:
Me: "Thanks for the Neupro. But were you aware that the professional samples that you gave me all had expiration dates that were long passed"?
Doctor: "Yes, but I wouldn't worry about that. They're still good."
Me: "Oh, and did you know that at the time that you gave me these samples, the FDA had ordered the recall of the very Neupro that you had dispensed to me and had prohibited dispensing same"?
Doctor: "Yes, but I wouldn't worry about that. The recall and ban had to do with an absorption issue of the crystals contained in the patch. But since I'm treating you for RLS and not for Parkinson Disease, it shouldn't matter."
Be well.
Not that these were his/her reasons but studies have shown that , generally, medications are effective well past their expiration dates and he may have been doing a cost/benefit calculation that the risk of expiration wasn’t strong enough to overcome the cost benefit of getting samples rather than paying out-of-pocket. If you had insurance, that argument has less weight.
As far as crystallization, it seems to me I read that this issue was dosage dependent in that it was the higher-dosage patches (>= 4mg/24hrs?) - used more for PD - that were primarily involved.
Still, esp. when trying a new medication it doesn’t help confidence level to have these concerns out there. If this is what they were thinking, they should have explained it in more detail for sure.
Hi, again, ircam2112, and thank you for your reply.
Coincidentally, that sleep expert neurologist prided himself of related expertise: though he wasn't treating me in that capacity, he said that he also was a psychiatrist. And during our many conversations over the 18 years that I was under his care, he also noted that he was an expert in pharmacology.
Having worked in a drug store (pharmacy/chemist shoppe) in varying capacities (stock boy, delivery boy, cashier, assistant to pharmacist, etc.) over a period of six years, more or less, we bantered about things pharmaceutical.
I recall, however, that when generic variations of Mirapex ceased to relieve my RLS, he attributed same to "bioavailability" of the pramipexole due to different fillers in the different generic brands. I ended up special ordering Mirapex direct from Germany and paying for same at my own expense until I realized that bioavailability was irrelevant; it was augmentation.
Yeah, let's say that the expiration date wasn't fatal. But for gosh sakes: dispensing the very medication that had been recalled by the FDA!
Be well.
It is best to steer away from Dopamine Agonists especially if you have already had augmentation from one before it is highly likely to happen again. That saidif you are going to use Neupro ---I am on Neupro patch but I only ever used the 1mg strength with regular breaks it helped me for several years then augmentation set in .I was determined not to higher the dose and am now in the process of weaning off I am down to a quarter of a patch and after Christmas going down to an 8th.So yes for some people some of the time you can get a decent amount of time where Neupro helps but augmentation is highly likely to occur at some point .Good luck x
Thanks. How do you do take 1/4 and 1/8? Do you cut the patch?
Yes cut the patch x
Did the doctor say that this is effective? It would be great to know I can do this if/when I taper off. Though, I’ve decided to try iron supplementation first. Tried first patch yesterday. Maybe a little better today.
Since being diagnosed about five or six years ago I have been on 2mg of Rotigotine. I also take 600mg of Pregabelin as I also have Peripheral Neuropathy. Along the way I have had prescribed 200mg of Tramulief and 40mg of Nortriptylene. Quite a mix but I have never needed to change the Rotigotine.
Good to know. Thanks. I was on 4, non-DA medications for a long time - Zolpidem, Pregabalin, Gabapentin and Clonazepam -with moderate control but developed tolerance to some or all so the last year I discontinued PG and GP and markedly reduced Zolpidem and Clono dosages. I tanked immediately and its been a hellish 8 months while, hopefully, my tolerance has been eliminated or reduced. I’m sleeping, on average, 15hrs/day and in bed trying to sleep for another 5-6 hours. Don’t want to go through this again so am willing to try DA’s.
There are known synergistic effects and, from my 2 decades of research, it’s because, overall, RLS, PLMD, Huntington’s disease, parathesias such as myoclonus and chorea (writhing movements) all appear to be “hyperkinetic” disorders with a general cause of having “leaky” dopaminergic neurons in which there are several species of dopamine receptors and calcium/other -gated ion channels, each channel with special characteristics that only allow certain medications to block the channels. I picture a neuron with a bunch of keyholes on it. Each keyhole only closes with a particular medication or class of medications. So, basically, the more medications (keys) you have, the more locks you can close (or open). The structure of gated calcium-ion channels (there are other types of channels as well) is pretty fascinating and the analogy of locks and keys is literally the way things work.
Hi there, I'm in the same boat. Unable to take pregabalin or gabapentin, I find myself faced with having to take Neupro before my doctor will even consider the next drugs in line. To be fair, I have no idea if those would work, and I am taking 1/2 of a 7.5mg hydrocodone along with the Neupro. All in all, it's working very well. It causes a nightly hot flush, which wakes me, and it makes my nose run, but the RLS is pretty well controlled. Infrequent breakthroughs are usually handled with my rather bizarre combination of a quarter cup of dill pickle juice, a dose of "Rested Legs," and a dose of Hyland's "Restful Legs." I dread the day when augmentation hits again, but I went ten months with less than two hours of sleep a night before Neupro, so sleeping is a huge blessing. May you and I both have many years of sleep before augmentation.
[FYI- "Rested Legs" contains Iron, Folate, Magnesium, Potassium, Valerian and Chamomile. "Restful Legs" contains Arsenicum Album, Chamomile, Coffea Cruda, Lycopodium, Pulsatilla, Rhus Toxicodendron, Sulfur, and Zincum Metallicum. Don't know what the deal is with the pickle juice. I arrived at this combination through trial and error.]
Thanks. Good information. The one home treatment that I’ve had the most success with is avoiding processed foods as much as possible, specifically, anything with free-glutamate which is an excitatory neurotransmitter (excitotoxins). There are so many ingredients that have free-glutamate that it is practically impossible to avoid completely but, like you, through trial and error, some of the worst are: MSG, anything “hydrolized”, whey, lechetin, soy or pea protein, anything fermented, undistilled/colored alcohols, most gravies, sauces, marinades and dressings, etc.. Aspartame (phenylalanine) makes my legs so crazy I haven’t had anything with it for 15 years. However, because my PLMD-like are severe, the dietary restrictions have only helped in part.
When the free-glutamate ingredients are manufactured, heat is part of the process which results in a high percentage of right-handed glutamate (natural glutamate is usually bound to proteins so is not ”free” and is in it’s natural left-handed structure (entanomire sp?). I believe that these molecules are the root cause of the increase in neurodegenerative diseases around the globe. They over-stimulate neurons to such an extent that they damage or even kill the neurons.
Searching “Excitotoxins”, ”other names for MSG” will give you a list of most of them and through the website, nutritionaldata.com (org?), you can look at most US/maybe UK too grocery products to determine the level of glutamate in them.
Thanks again.
Hi again. I forgot to add that I am on the 1mg patch. If ever that stops working I will refuse to take more and wean off of it. Hopefully I'll be able to find a medical practitioner who will understand about augmentation and help me find the next solution.
Though I filled the prescription for Neupro - paid $905 for 30 1mg patches!, my level of desperation revealed, have never had a pharmacist look at me like that before lol - but will be reimbursed by pharmacy as my doctor successfully appealed the decision. Yay PA, Arthur and Dr. B! I’ve decided to try the gentle iron approach first over the next 7-10 days but am visiting family over the holidays and desperately want to be better for it. Last visit I spent almost 100% of time in bed with profound EDS.
Please keep the comments coming and thanks to all for your input. This group of helpful and caring people is a great thing. Puts my faith back in the power of social media!
I’m in the process of packing so may not be able to respond but will eventually read everyone’s comments.
Just FYI, the 1mg Neupro patch worked ok but started to fade in early January. Increased to 2mg and have had the best 10 consecutive days in years. It is disrupting my sleep schedule quite a bit though. I tried putting on a new patch at different times of day but nothing seems to help e.g.) feel sleepy at 10pm, sleep for 2-3hrs, up and energetic for 4 hours, sleep again then up for all or most of the day. This happened with the 1mg patch too. Do other people experience this? I hope it gets better over time but overall I’m doing sooo much better now. I’ve surrounded my bed in garlic cloves and a circle of salt (jk) to ward off augmentation. We’ll see how long it lasts.
Hi ircam, I used Neupro for approximately 3 years. The medication became effective at 3 mg. That worked for awhile ( I don’t recall how long)until it didn’t and then the rapid increasing started. By the time all hell broke loose I was on 9 mg. Way over the max but my neurologist at the time told me that it was fine to take that amount. ( She actually prescribed two 6 mg patches daily) Around 4 mg I started to suffer from Impulse Control Disorder. At the time I had no idea that it was from the Neupro. Needless to say augmentation hit me pretty hard and coming off of it was 18 months of pure hell! I was suicidal, suffered from anxiety and quickly became agitated. The medication left me with permanent brain damage according to one of those RLS specialists. I know you “ have to do what you need to do” but please be very careful!! If you have to increase to 3 mg., you might want to reconsider. This is a horrible disease!. Keep us posted with the efficacy of the 2 mg patch.
Thanks so much for the reply. Sorry you had to go through that with Neupro. Years ago, I was prescribed the max dose of Requip (4mg) right off the bat and had impulse control issues as well that I didn’t recognize until it was too late too avoid consequences. I wanted you to know you’re not alone in that and that it happens to others with RLS. The urges I had resolved with stopping the medications but know that it did change my brain in other, somewhat related, ways. I think it has to do with how your body tries to adjust, to achieve homeostasis, under the new condition of having excess (compared to “normal”) dopamine throughout the brain, not just in the area(s) that are specific to RLS.
I even think that experience years ago (14+) may be affecting the way I’m responded to Cardopa/Levodopa 2 years ago (lasted 3 weeks) and to Neupro now. The initial response to 2mg began to disappear right around the time I made my last post above. I’m beginning to have a very hard time getting out of bed, even for basic ADLs, want to sleep all of the time and am sleeping much more - 13hrs today so far. SI, if like before Neupro, will soon follow. I’m not going to ask for an increase to 3mg as the risk of impulsive issues and augmentation will only increase and there’s a good chance I’ll have the same result. But, I’m going to continue the 2mg to hopefully postpone SI and worsened symptoms as long as possible. I think my brain is now “primed” to respond to increased dopamine much more quickly.
What I may try, if things get to the point they were prior to Neupro, is asking to try Requip, C/L and Neupro on a rotating schedule, maybe with some down-time in between switching medications. Maybe their pharmacology is different enough to keep my brain off balance enough to have a positive effect. We’ll see what my doctor thinks. I filled out an appointment request to the Mayo Clinic today.
What’s really, really frustrating is that opioids + benzodiazipines + Pregabalin were really effective for a long time - 2+ years without an increase in any of the 3 medications - but since the opioid epidemic, the FDA has been cherry-picking any data they can get to get physicians to not prescribe these together (thereby finding yet another way to reduce opioid use nationally). If you read the studies that the FDA used to justify this “warning” (attached), it’s 100% politically-motivated fraud! One study was with 12 people, another was with 8. Looking further at the actually studies themselves, the number of adverse events and deaths reported due an interaction was 10X+ less than the number of people struck by lightning over the same period! I think it was 4 events over 5 years)! So basically, physicians won’t prescribe these together for virtually no reason whatsoever. To add to the frustration is that the FDA doesn’t even recommend to not prescribe them together, they only say “be aware”, “monitor” and “inform”. Aug.
RLS sucks but thank you again for your response Merny5 
Neupro patches
Coming off Neupro
Neupro Vs. Ropinerole
Questions about Neupro
