Neupro patch a learning experience - Restless Legs Syn...

Restless Legs Syndrome

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Neupro patch a learning experience

Cats2 profile image
22 Replies

I'm on the Neupro 2mg patch after a ridiculously difficult cold turkey weaning from Mirapex (1.5mg nightly). I'm finding that there are a few things the directions don't mention but that seem to make a difference in how well it works.

1. Cleaning the area - if I use one of those face soaps that contain emollients.... it doesn't work as well. If I use a clear glycerin soap it works better.

2. Time of patch change. Night just doesn't work for me. I know it's continued release but I seem to do better if I do it in the morning.

3. Placement of patch - thighs don't work, period. Upper arm is the best.

Anyone else noticed this about the Neupro patch?

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Cats2
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22 Replies

Alot of people seem to find their own way when dealing with the patch. I never had a problem with it sticking. I always replaced mine in the evening, around 6-00 it took til bedtime to kick in. I also found that it worked better on my upper arms, even tho they give various other places to use. I dont use it now, as i reached the 3mg which is the highest recommended dose. Altho i have some patches here, in case i want to switch for a while.

debchau profile image
debchau in reply to

so it only goes up to 3mg what then? do you use 2 at a time? I'm going to be using the patch and I'm curious to how many mgs I can go.

Hi I always stick a plaster over mine to make sure it sticks well and I only use simple soap anyway as it has no perfume or additives.

I find it best on upper arms.

I change it at 4pm so plenty of time to kick in before bed, I also leave the old patch on for about 4 hours before removing it.

I have only had 2 nights of symptoms since starting it a month ago and they were moderate.

I am still only on the 1mg and very pleased with it so far.

on the 2 occasions when it didnt work well I panicked thinking it had stopped working for me but the following night been ok.

I do take it in combination of other meds to try and keep the Neupro patch dose low.I take 3 meds all on low dose.

Good luck x

Jrskyhook32 profile image
Jrskyhook32 in reply to

May I ask what other meds you take with neupro?

Hi Cats2, I do the same as P1pp1ns, I change the patch in the evening, though I do it at 6pm. It has usually taken effect by the time I go to bed. I also leave the previous patch on until about 10pm, so that the new patch is building up as the previous one is reducing the dosage. Shower gels etc don't seem to make any difference. I also stick a plaster over my patch as a safeguard. I'm on 2mg, and I do have breakthrough symptoms, but the patch is definitely the most effective med I have tries for RLS. Upper arm and also my shoulder blades work best for me. If I stick it on my thighs I would be as well not using a patch at all. I also take Lyrica around 7pm and the two meds combined make me very tired to the point that I can't stay awake. No life for me after around 9.30pm as I'm like a Zombie, but it's a price worth paying to get some sleep.

in reply to

Hi I also take lyrica at 9pm and find the 2 work well together , add in a painkiller and I am ok on 1mg patch . However only been on Neupro for a month.Can I ask what dosage you take and if you had to increase it after a time? Thankyou x

in reply to

Hi P1pp1ns, I use Neupro 2mg. I started out on 1 mg but it's not enough now and I had to increase to 2mg. I sometimes think I need to go higher but am reluctant to do so as I worry about increasing the risk of suddenly falling asleep, especially while driving. On the whole the 2mg dose is enough, but sometimes I take a drug holiday, when I take Mirapexin for 2 weeks, then go back to Neupro 1 mg, working slowly back up to 2mg when I need to. I haven't taken a drug holiday for around a year now though. Hope this helps.

in reply to

Thankyou for your prompt reply , yes helpful thankyou.I had augmentation on mirapex so always a bit wary! I had 6 months with no Dopamine meds before Neupro so may be why 1mg is working 95 percent of the time and any symptoms have been tolerable. C

in reply to

Long may it continue.

gretakmac profile image
gretakmac

Also on Neupro, but did not go cold turkey. I was on ropinorole, 6mg, which is ridiculously high, prescribed by my new neurologist. Reduced it to 1.5 mg and 2 mg patch. Not enough, so now 4mg plus the ropinorole. Hoped to get off the ropinorole completely, but finding this is the best combo for me.

Replace mine at noon every day, but then have a bad hour or two about 8 -9 pm. Will try later and keep old patch on for a while. Definitely find the shoulders and upper arms are the best spot for them, but hard to follow a rotation they recommend. If I use chest, it gets very itchy, but upper thigh seems OK, just have to be careful not to rub them off with clothing. Maybe this is the answer for a lot of us!

debchau profile image
debchau in reply togretakmac

so i'm taking ropinirole now also 6 mg and my new neurologist said for me to discontinue the ropinirole once I'm using the patch. from what you are saying you are using both, doesn't that defeat the purpose of the patch?

annakalia profile image
annakalia

I havent heard of the patch if my meds stop workingit may be an option for me so thanx for the information.

in reply toannakalia

Hi, some members in UK have had problems getting the patch from their GP but others have no problems. This is because it is very expensive compared to the tablets, In my case I just had to show that I had tried all the tablets first.What are you taking now ? X

I have noticed people before say Neupro doesn't work if placed on thigh, I wonder why that is? X

gretakmac profile image
gretakmac in reply to

Since reading this thread, I have stopped putting the patch on my thighs, and sure enough I have not had a bad night since (at least 2 weeks!) I am finally getting enough sleep and my energy is returning. Fingers crossed, this keeps working for me!!

Tiredparent profile image
TiredparentRestless Leg Syndrome

Thigh works best for me! I also use plasters. However, I don't clean the area but I make sure I don't have body lotion on that area.

I have my mobile phone alarm set to automatically go off at 6pm each day to remind me to put a new patch on. If I put it on too late, it is no good.

annakalia profile image
annakalia

does the patch have side affects?

in reply toannakalia

Hi Annakalia, well I can only speak from my own experience but I haven't really had much in the way of side effects.Was a little drowsy at first but that passed within couple of days, I have some ankle swelling but I got that with mirapex too.Some people get itchiness at site of patch but I haven't had that.We all different so others may have had more issues.For me the benefits outweigh the ankle swelling.Hope this helps ..pipps x

barbara411 profile image
barbara411

only that Neupro patch almost killed me, no one told me that it could make me sleepy instantly, and it happend while driving downhill , lucky after bad accident still alive , car turned more to the right and there was a guardrail that saved my life and not in an oncoming car, while falling instantly asleep, I woke up when the police knocked onto my car window. I would be for sure dead and may be the other people in the car, if the car went on straight downhill

how can this even be given to anyone who needs to drive and was not mentioned by my neurologist or pharmacist. expensive medication paid $ 140 or so for one month, I still have most of the patches and would never touch it, unless I am never driving.

I got after a while horrible augmentation of all the medications for Restless leg, if it was Requip, RequipXL, Mirapex etc. etec.

Cats2 profile image
Cats2

I had the same thing happen - instant sleep without any warning while driving. I was very lucky; it was shortlived and I stopped myself before I plowed into the car in front of me at the stoplight The second time I almost drove into the swimming of a house on the corner of my road. I also find it just plain doesn't work!

Gosh all this suddenly falling to sleep whilst driving is scarey! X

Cats2 profile image
Cats2

That's what I thought. I don't think my neighbor would have liked finding a Subaru submarining in his pool. I saw my family practice doc (well actually she's a PA) yesterday and she prescribed Trazadone to get me through to my neurologist appointment at the sleep center in December. She was very surprised that the old neurologist wanted to increase my Neupro patch to the 4mg patch because it isn't approved by our FDA at that level for RLS. I really wish there were some definitive guidelines on this. If I cut much more stuff out of the food department I'll be living on celery sticks and radishes!

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