Restless Legs Syndrome (RLS) Discussion Board

Long time no see all! I usually pop up when something changes. So.....here I am. My WED has been stable for a long time. I was DIALED in. And for whatever reason (probably hormonal changes) it feels like I have been "plugged in" to an electric socket. So I went in to see Dr B. He suggested I try the neupro patch. I have tried everything else and I really don't want to go up on my opiate regiment. I have enough side effects already. But I am so scared to ever go through a withdrawal that looks anything like my requip withdrawal. He said studies look pretty good so far and incidence of augmentation in 5 years looks low. Very low. But no guarantees after that. I also asked him about the nausea because I used to get really ill on my requip. He said that is a possible side effect. But if it can slow things down I feel it is worth it to give it a try. I have a months worth of samples. After that, if it works, I'll have to figure out how to get insurance to pay. So has anyone here tried the neupro patch? Any luck? I feel very comfortable and trust Dr B but I would be lying of I said I wasn't nervous:(

I tried it. For me, it was exactly like pramipexole. Same side effects. I'm not a good person to look at in another way, though. I augment in less than a week on most things. I had augmentation issues with rotigotine, too - at least I THINK I did. I stopped it immediately when it seemed that things were worse, so can't be sure.

One thing to thing about in case this doesn't work....

For two years, I kept my opoid use low(er) and had NO increases because I alternated it with pramipexole. If you can reduce the opioids twice a week, using something else, it seems to be incredibly effective at preventing any increases.

That may not be your issue with the opioids....but keep it in mind if this doesn't work. It might be one more option.

I have been on Neupro for about six months now and it has been a major improvement compared to pramipexole. I started augmenting on 0.5 mg pramipexole after about six months. I was seeing WED breakthroughs just before each dose and was had to shift my afternoon dose to lunchtime just to get buy. I transitioned to the 2mg Neupro patch in a week using 1mg patches and smaller doses of pramipexole. Now it is unusual for me to experience breakthroughs at bedtime.

I change the patch each morning when I get up. I rotate the location the patch is applied using the schedule provided by the manufacturer. I experience some redness at the application site, but that goes away in about a day. The only "problem" that I experience is that it usually starts itching after about 12 to 16 hrs at the sites located on my abdomen and back, but not on my shoulders or thighs. I think that this is due more to the presence of the patch than an effect of the medication.

The only caveat that I would offer is to make certain that the patch is applied to clean, dry skin. We had one lady a month or two ago who was having issues with keeping the patch applied. Turned out that she was using a body lotion and the lotion was preventing the adhesive from working correctly. If you have problems keeping it applied, medical or athletic tape works because it uses a stronger adhesive.

I think that for me, the major improvement offered by the patch as opposed to either of the DA pills is the time-release aspect. I am not seeing the increasing swings is DA in my body like I did when I was taking pramipexole twice a day with increasing dosage. Now, I get a small increase when I change the patch each morning, so my body no longer experiences either the high nor the low DA levels.

As I posted before under Getting Off MIrapex, my specialist has a rather novel approach for withdrawing from the drug. When I saw him on Nov.24, he wanted me to keep on with Mirapex at the usual dose (.25 mg at supper and .25 mg at around 9:00 p.m.) AND use the 2 mg Neupro patch until my next appointment on Jan.6. At that tine I will begin the withdrawal from Mirapex process. I could have chosen taking an increasing dose of Lyrica instead but I was concerned it would not be up to the task of covering the withdrawal pains. I know I run the risk of augmentation with Neupro but I am hoping that reports that
augmentation is less likely with the patch. My situation is better since starting the new regimen but I do have breakthroughs. Maybe they will be less once the augmented Mirapex is out of the system. I live
in hope! I am a little apprehensive about what will happen during the weaning process. A blessed and joyful Christmas to all!

Here's hoping it works.

I will be really interested to see how this goes for you, good luck.

I have been on Neupro patch for 5 months now. Had a few learning curves along the way. Found that when I applied it to my thighs it did not work at all. Started on 2 mg, but I am on the 4 mg patch, supplemented by 1.5 mg of requip. For the first while it was miraculous. No symptoms at all (as long as I did not put it on my thigh).
Eventually I have been getting some breakthrough symptoms, which is why I am here after 2 am instead of sleeping. For the past 6 weeks I have been having an allergic reaction to the adhesive, which is not uncommon. Since this is the only thing that is working for me, I am persisting with the patch as long as I can and hopefully something new will come up. Has anyone else experienced the itchy rash and if so how are you dealing with it?

Hi gretakmac: I've been having an experience similar to yours. On Nov. 24, my rls specialist added the 2 mg patch to the twice- a- day .25 mg dose of mirapex.
His intention is to gradually wean me off the (augmented) mirapex after I see him this coming Tuesday (Jan.6). The double drug combo worked well in the beginning
but less so lately, although I have not had any site or itchiness issues. After Jan.6, will my rls journey be a descent into hell or an ascent into heaven? I'll keep you informed.

gretakmac: I do not know a lot about it, but what you are describing certainly sounds like augmentation. And that you are taking 1.5 mg ropinerole PLUS the 4 mg patch puts you at what is now considered too high of a dose, I'd think.

When you say it's the only thing that has worked, what else have you tried. Many of us are pretty sure we've tried everything and then we find out that there are still a few more options. You may indeed have tried them all - we'd be happy to listen and offer any other solutions we know of if you would share what you've tried.

Edited to add: I started to create a post that includes all the prescription medications available to us. I didn't finish it - too tired and the WED was bothering me - but you might look at it. I'll finish it in the next day or so. viewtopic.php?f=2&t=1068

I would agree with Views that both of you would appear to be experiencing augmentation. Take a look at the information in my signature to decide for yourself. But with 0.25 or 0.5 mg of pramipexole being the maximum recommended dose for WED, both of you are at that level PLUS the Neupro. So the problem may not be the Neupro but is related to the pramipexole levels that you are still taking.

I can also add that I was switched from 0.5 mg pramipexole to 2mg Neupro six months ago due to augmentation on the pramipexole. My doctor had me a 1 mg patch for a week supplemented with 0.25 mg pramipexole. I then went to the 2mg patch, which is where I have been ever since. I did not have any issues during the transition.

I've often wondered if my situation will improve when the augmented mirapex is out of my system. I've also wondered why my rls specialist didn't start the weaning process
from mirapex when I saw him on Nov.24 rather than waiting until this coming Tuesday. Ironically, the past two nights have been free of rls breakthroughs. It's (dopamine-
induced???) insomnia that keeps me awake. I am thinking of asking my specialist about adding a little Lyrica to the mix in order to induce sleep.

If you are interested in adding Lyrica, you might also ask about gabapentin. Gabapentin is in the same class of medications, should help with inducing sleep and is much less expensive than Lyrica since it is a generic medication.

I tried Neupro. I was using the max dose of 6mg within a week. I can't remember if Neupro is a DA. If it is, I would advise completely getting off the DA's and then trying Neupro. Withdraw is hell and cold turkey is the best way to do it; you will need a narcotic and at least 3 days. If you are majorly augmenting, withdrawals will begin rather quickly. I was manic and ate pickles by the gallon. I really don't like pickles, but better pickles than many other things. It's bad, but so were me augmenting symptoms. I had serious compulsion issues, pain in my arms and neck, numbness in my hands and feet, sleeping less than 4 hours a night, and I fell asleep at work and while driving.

Best of luck to you.

On a side note, ask your doc if he will give you Flexaril. It's a muscle relaxer. I don't know if it will ease your withdrawal, but it is my miracle maintenance drug. Once you get DA's out of your system, you will feel better than you have in years.

When I saw the rls specialist yesterday, I told him that the 2mg patch, which worked well for a few days after I started it on Nov.24, has been working less well lately.
I told him that the previous night had been quite bad, much like the time I was only on mirapex. I know that rls symptoms can wax and wane but this seems to me
like augmentation. When I mentioned this, he said that no one augments that quickly. I think that some on this board would disagree. His response was to raise
the dosage to 4 mgs which I hesitantly took. It did give me an rls-free sleep. However, I am concerned about the longer term. All the literature that I
read says the maximum dose for the patch should be 3 mg for those with rls. Because of my apprehension, I think that I shall go back to 2mg until I see
my GP next Monday.

It's so hard to deal with docs who don't see a LOT of patients.

Few of us augment that quickly the first time, but some do. And, once you've augmented, anyone may augment more quickly the second time. That is something many docs have no experience with.