Has anyone tried Neupro for RLS? Was it a patch? If you have used it, how effective was it for you?

RLS treatment

[Hidden]

Hello again

I recall you were previously taking a massive dose of pramipexole and wonder what's happened since.

I've never used a Neupro patch, but I am aware of other's experience of it and also have a couple of thoughts of my own.

My first thought is that if you are still taking 1mg pramipexole and you're considering switching directly to rotigotine OR have already done so, then I hope the dose of Neupro is equiavalent to the dose of prami, otherwise you will get withdrawal symptoms.

Second, switching to Neupro is not ideal, since, I suspect you were already suffering augmentation due to a DA (pramipexole) and rotigotine is yet another DA with the risk of augmentation. That risk is greater for someone who has suffered it before.

I recall also that you cannot take an α2δ ligand because of breathing depression.

There is some evidence that switching from an immediate release version of a DA to an extended release version can possibly help with augmentation. Neupro seems to be the most commonly mentioned.

However, just to make you aware, Neupro is not the only extended release DA, there are extended release versions of prami and ropinirole too.

They are tablets. Good to know since a skin reaction to the neupro patches seems common and as a RN you may already be aware that it's best to put them in a different place each day.

Another thought that it is best to be on a low dose as possible of any DA to avoid augmentation. Therefore it might be a good idea to consider that, and reduce it if you can.

I don't recall if all the other things that you can explore to help with RLS were mentioned, but there are non-pharmacological measures and iron levels, particuarly are a very significant factor.

Look aftrer yourself, so you can look after others.

[Hidden in reply to Hidden]

Thank you Manerva! You have covered a lot of territory here. Let me just say at the outset that EVERYONE does NOT respond to ANY medication in the same way. What works for one does not necessarily work for another. Additionally, doctors don’t always agree on treatment options and surprisingly they sometimes don’t really know a lot about pharmacy! Don’t let that surprise anyone. I have witnessed it first hand many times over the years. Each of us almost has to manage our own care now; we are our own case managers. Having said that, I decided to start decreasing the Pramipexole prior to seeing my doctor. I have cut out .25 mgm which leaves me taking a total of .75 mgm over this last week. I can tell a difference for the better. I’m not “there” yet, but I’m not as wiggly and pain is less. That doesn’t mean that I will not consider a change in medicine. Requip did nothing for me and Gabapentin made me feel like I couldn’t breathe. The reason I mentioned Neupro is because of its extended coverage. It’s hard to say at this point if I will need that or something similar. It is possible that the rebound effect of Pramipexole will improve as the dosage continues to be decreased. I plan to discuss the iron connection with my internist. She is smart and thorough but I’m guessing this will be new information for her. Soooooo, on we go dealing with these crazy, annoying and at times debilitating symptoms of RLS!

Thanks everyone for your input.

[Hidden in reply to Hidden]

You're right that not everyone reacts quite the same way to the same medication.

It may aso be true that not all doctors agree.

However, I can't imagine that anybody is so different that they can guarantee escaping the consequences of what are generally agreed doses of dopamine agonists for RLS.

These drugs are only licensed up to a certain dose. Certainly pramipexole is only licensed up to 0.75 for RLS in the UK. Internationally, RLS experts agree even that is too high.

The only other thing I'd say is that you're reducing the pramipexole too fast.

I suggest you read up on what MOST people commonly experience as result of withdrawing from a dopamine agonist

This can be helped by starting on a replacment.

I agree, especially in relation to RLS, you do have to manage your own care. Particularly because doctors tend to be very ignorant about it. However, this is best done in an informed manner.

[Martyrtothecause]

I've been using the Neupro patch for a number of years and have found it quite affective in keeping my RLS attacks under control. That said, I should point out that I don't suffer anything like some RLS sufferers. I can go 5 or 6 nights with only minor discomfort throughout the evening requiring me to constantly stand, stretch and pace about, but which subside when I go to bed. Then once or twice over a period of 7 - 10 days I get severe attacks which tend to last anything between for up to 36 hours and 48 hours.

Things were far worse prior to being prescribed Neupro patches, so I remain reluctant to try any other alternative medications.

I hope this helps.

[YodaDog in reply to Martyrtothecause]

Hello, I use the patch, in combination with ropinirole and gabapentin. It works well for me. I've been taking it for about a year now and I've been able to lower my ropinirole dose and almost eliminate signs of augmentation (earlier onset of symptoms and symptoms in other parts of my body). I am seeing a neurologist who specialises in RLS soon and will be asking about withdrawing off the DAs though, as I suspect I will eventually suffer from augmentation again. The biggest drawback for me is the skin reaction, sometimes (but not always) they cause an itch, but only for a while (or until I'm distracted).

[martino]

I use a 2mg patch. It works for me. If, as occasionally happens, the patch comes off then my legs start to get restlesser- I may have authored a new word here.

[ELECTRONTRAV]

I was on Ropinerol for about 3 yrs but had augmentation and had to wean off it, very nasty. I had seen on the forum that Neupro was effective and less prone to augmentation so that is where I went next, I realize it is a DA, I have been on it at 2mg for about 2 yrs and all is quite well. I find that a 14 day cycle of patch placings works ok using my chest and back and shoulder tops but they must all be above nipple level or they do not provide enough control.

The skin irritation problem can be minimised by using cortisone cream after taking a patch off. I suppose eventually I will need to get off these as well, but for now I am happy. If you do go down the neupro route keep a chart of each nights result and where a pattern of poor control shows up , move that patch to a different place, just the width of a patch can make a lot of difference. Hope all works out ok for you with this hateful problem

[Chester09]

Ive been on the neupro patch for 4yrs started on 1mg now on 3mg and some timex i have to put 1mg on aswell but when ifirst went on it , it was a life saver l was really at a bad place i had tried everthing l was sooo fed up with my legs!!l paid to see a nuero doctor could,nt believe after about 20yrs of suffering l had a good nights sleep its still working for me but not quite as good have gone on gaberpentin now aswell l take 2 at 7pm 2 at 8.30 then 2 at 10pm l know l will have to come off the patch at some point but at least l have the gaberpentin which l can increase.Hopefully

[Nonsleeper]

I’ve been on the Neupro patch for about 2 years now having had terrible augmentation on Pramipexole. I currently am on a 4 mg patch but sometimes cut them in half to see if 2 mg is enough to control symptoms. It isn’t always. However, it is far better than what I experienced on the former medication. I haven’t had my iron levels tested in a while but my neurologist says there is a correlation between low iron and rls. I hate that I am forced to use such an expensive medication...I don’t know how the pharmaceutical companies get away with their extortion....but it is what’s working for the moment. I do worry about the long term side effects.

[Trikkinoy]

I was on requip for 1 year and started augmenting extremely bad I was changed to the Neupro patch and it worked for a couple days and then the augmentation hit me again hard. I had to go back to the requip and am currently trying to wean off completely. I want off ALL DA’s since the just keep making me augment. My goal is to just take the Gabapentin and a narcotic to control the symptoms. This augmentation stuff is no joke! 😩😩😩😩😩

[Heatherlss in reply to Trikkinoy]

It really isn't. For me, my RLS didn't settle one bit even after weeks of being off of DAs. It was non-stop. No matter how strong I tried to be, at some point, I just couldn't take it. That time has come again.

Have you started dropping the dose ?

[restlessstoz]

I augmented on Pramipexole and after going through hell withdrawing from that and trying other medication to no avail, did try Neupro patch. It worked well for one week then I started to augment and by two weeks had to stop it. I also found I had severe pain in my back and headaches with it! I don't know why pain in my back but as soon as I stopped it, the back pain went too! Having gone back on Pramipexole in August last year to save my sanity, I now am augmenting again on it and will have to look for alternatives! Good luck to you in your search for a drug to help with this nasty condition.

[Heatherlss in reply to restlessstoz]

Hi Restlesstoz,

Long time.

Shame that you're in augmentation again. I'm myself in the same state. Have you tried an opiod ?

[restlessstoz in reply to Heatherlss]

Yes but not with good success Heather. I'm currently on Targin as well and it helps a bit but doesn't seem to work on its own... even at 30mg dose. Going to look into methadone as I've tried everything else except cannabinoids. Very frustrating.😒

[RLSforyears]

I've been on Neupro patch for 3 years. Ropinorole gave me bad gastro side effects and I was having breakthrough symptoms. Neupro works great, although I'm starting to need higher doses, unfortunately. I have serious RLS and Neupro controls it really well.