Neupro Patch

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debbluebird
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Re: Neupro Patch

Post by debbluebird »

Yes you are right. I understand where you are coming from, but the difference is I am not exercising anymore. I just have to see what will happen. If I have to increase it again I will. No big deal. I always have to see if I can take less meds. That's just how I am. I'm also wondering when I start the patch, will I need this much methadone. Of course my hips are getting worse and I may need more for them. If they are like my knees were, then they will make my WED/PLMD worse. No worries. :D

rthom
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Re: Neupro Patch

Post by rthom »

Ah, I knew I was missing something. Ok, are you on the same dose of methadone as you were the last time you took it alone?

P.S. I have to leave for a few days--be in touch later. Good luck with it!

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

Well, today is day four or five, I think. I used 1 mg for the first 3 days, then went to 2 mg.

I was able to sleep last night without any other drugs. I had some wiggles and woke up a few times and did leg exercises. I got to sleep again quickly.

But, much like pramipexole, I have this weird sort of wired sleep. I awaken constantly. I must have been awake 20 times in 6 hours. I had an early call. I was awake at 7:30, 7:43, 7:56, and so on. In the first part of the night, I only awakened every 45 to 60 minutes.

I'm pretty darn tired today. It's almost 3 PM and the patch needs to be replaced at 6 PM. I'm doing a dance in my chair to get anything accomplished for work. I'd think best time to replace the patch would be noon. You'd not really need it as it petered out in the morning and it would be fresh enough to get you through the night.
Ann - Take what you need, leave the rest

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rthom
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Re: Neupro Patch

Post by rthom »

So it is decreasing in effectiveness already, or are you having something else likely going on?

badnights
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Re: Neupro Patch

Post by badnights »

I know that kind of waking up. It began in me a few weeks ago. Way long ago, it used to go on all night, which is why I started using zopiclone (in addition to the hydromorph contin).

After that, for years, it still happened in the early part of the night, but I could pretty much count on a good sleep, if I was allowed to sleep in, from about 4 AM onward. Now, for the last few weeks and for obscure reasons, I am waking lots in the morning, same as you describe. I can't understand why.

I started using modafinil, but that was AFTER about a week of waking a lot in the mornings. It might be making the problem worse or not affecting it but it is definitely not helping it.

I suppose changing the patch at noon would help, but perhaps your sleep would still be fractured. Do you have bad reactions to the z-hypnotics? Would that be an option, to add one of those at night?
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

rthom wrote:So it is decreasing in effectiveness already, or are you having something else likely going on?


I started with 1 mg just to see if that would work. I then titrated to 2 mg - which is likely the correct dose.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

badnights wrote:I know that kind of waking up. It began in me a few weeks ago. Way long ago, it used to go on all night, which is why I started using zopiclone (in addition to the hydromorph contin).

After that, for years, it still happened in the early part of the night, but I could pretty much count on a good sleep, if I was allowed to sleep in, from about 4 AM onward. Now, for the last few weeks and for obscure reasons, I am waking lots in the morning, same as you describe. I can't understand why.

I started using modafinil, but that was AFTER about a week of waking a lot in the mornings. It might be making the problem worse or not affecting it but it is definitely not helping it.

I suppose changing the patch at noon would help, but perhaps your sleep would still be fractured. Do you have bad reactions to the z-hypnotics? Would that be an option, to add one of those at night?


It never happens with methadone - that's the one thing I LOVE about it. I sleep soundly, rarely wake up (even to noises). I've always been a light sleeper, so methadone was a lifesaver in that way.

Yes, switching to noon is unlikely to help with the sleep issues. I'm honestly not sure which sleep drugs I've tried...not many. I do remember Sonata - that never did anything. I tried one other for sure....can't remember which. I don't remember it working, either. Benzos do work to keep me asleep - but not wanting to go down that road.

Actually, hoping not to go down the any road....but will if I have to. Mostly now just writing down what's happening. It may not continue to do this. We'll see as I'm very tired and on my way to bed - one of my earliest voluntary bedtimes in a long time.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

veldon7

Re: Neupro Patch

Post by veldon7 »

I thought about trying the patch, but it seems to me that if you have to have that high of a dose, you would augment, even though they say you don't. I may as well take the pill. I don't need it too much during the day. I thought about asking the Dr. to change the Percocet to Methadone, but I also read the side effects of Methadone, it can cause insomnia, and if I still have to take the Mirapex anyway I don't think I'll take the opioid. I thought I could get off the Mirapex with the opioid but apparently not. :(

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

veldon7 wrote:I thought about trying the patch, but it seems to me that if you have to have that high of a dose, you would augment, even though they say you don't. I may as well take the pill. I don't need it too much during the day. I thought about asking the Dr. to change the Percocet to Methadone, but I also read the side effects of Methadone, it can cause insomnia, and if I still have to take the Mirapex anyway I don't think I'll take the opioid. I thought I could get off the Mirapex with the opioid but apparently not. :(


You can't compare the dosage in mg. It's being delivered 24 hours a day. When you take .25 mg of pramipexole or .75 mg of ropinerole (that is about equivalent dose), it's only working for about 4-6 hours. So, you'd need about 1 mg of pramipexole over the same period or 3 mg of ropinerole. Also, Neupro, or rotigotine, works differently, just as pramipexole and ropinerole work differently, so not as much of the drug is metabolized. Those two things mean that you need a higher dose to get the same results.

All opioids can cause insomnia - you won't know if you don't try.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

Update - I'm not a happy woman at the moment :-(.

The first night at 2 mg I likely has residual opioids in my system. I had some symptoms, but not enough to be terrible. Day two, at 2 mg, however (day 6, I think, of using it), was not a good night or day. I had symptoms all night long. Not only did I have them all night long, I had them in my arms. I NEVER get them in my arms unless I've augmented. Additionally, I had symptoms all morning and all day - with the patch on. Even if the 2 mg wasn't enough at night, it definitely should have covered anything in the morning or afternoon.

I was ready to take a break from it anyway - I'd intended only to take it 3-5 days. I took it longer because I wanted to get to the right dose and see how it worked.

At 7 PM tonight, I had to take 10 mg of methadone - I normally would have only needed one. I took 15 mg more between 10 PM and 1 AM. Of course, the resulting alertness kept me from bed until 5 AM. I slept a whole 35 minutes to be awakened by huge PLMs that were causing me to kick out. These continued after awakening - something that happens rarely to me unless things are pretty bad.

I've always felt that I wasn't a good candidate for any regularly DA usage since I augmented originally in a very short time - I don't know how many days, but it was likely around 5-8 days. But, I want to be a good candidate :-).

It's 7:30, I'm miserable and tired, I still have PLMW and active WED, and I took another 5 mg of methadone, more than I've ever taken in a 24 hours period. Not a good sign.

To round out the side effects, I had many of the same ones I had on pramipexole, just lighter. I had more vivid dreams, but not crazy. I had frequent awakenings, but could get back to sleep quickly (on pramipexole I'm often awake for up to 30 minutes upon awakening). I had little to no sex drive, but could have an orgasm. I spent more time thinking about food, but didn't seem as compelled to go get it. I had songs stuck in my head, but could get rid of them more easily.

I had no difficulty with the adhesive, though placing it was harder than I thought. It worked best for me on my breastbone or hip. It's also a bit tricky to get on - you're not supposed to touch it as you will take off the medication and get it on your fingers, where more will be absorbed than should be.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
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Re: Neupro Patch

Post by rthom »

Sorry it's rough Ann. I've also been having a bad one but mine is likely due to changes in routine (I'm guessing---) any chance it's similar for you?

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

rthom wrote:Sorry it's rough Ann. I've also been having a bad one but mine is likely due to changes in routine (I'm guessing---) any chance it's similar for you?


I only wish. I haven't change food, routine, supplements....except the new drug. This is normally the best part of the day for me and I'm miserable. I can sit here and type, but only with constant movement. It's not like it is when untreated, but to have this level of symptoms and have 30 mg of methadone taken in the last 14 hours is crazy. The only time mine is ever in my arms is when I'm augmented, I think. The arms things is my freak out - that's when I know it's what I'm taking is not good.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Neupro Patch

Post by Polar Bear »

Ann, I'm very sorry that this doesn't appear to be working for you. We try these things with optimism and hope, even if the optimism and hope is not quite 100%. I reckon that you know more than most about medications, how they work, interact, how long they work for, just about anything there is to know, and still this awful disease can just laugh at us. Will you continue to give the patch a few attempts ??
There is something not good when 30mg methadone doesn't cover the symptoms.
Frustration is not a good friend.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Neupro Patch

Post by ViewsAskew »

Polar Bear wrote:Ann, I'm very sorry that this doesn't appear to be working for you. We try these things with optimism and hope, even if the optimism and hope is not quite 100%. I reckon that you know more than most about medications, how they work, interact, how long they work for, just about anything there is to know, and still this awful disease can just laugh at us. Will you continue to give the patch a few attempts ??
There is something not good when 30mg methadone doesn't cover the symptoms.
Frustration is not a good friend.


I just drank 5 mg of d-ribose to see if it would help. I still have symptoms but they do seem lessened. I'm not getting the strong urges that result in movement, though I feel that charged feeling.

I emailed Dr B after I posted here. For all intents and purposes, this feels like augmentation to me. I know that augmentation rates are supposed to be low, but that may be for several reasons. My guess is we do not yet know what augmentation rate is with people who've augmented on multiple DAs. I've augmented on three - pramipexole, ropinerole, and carbadopa/levadopa. I augmented in about a week with one and on the first dose of the other two.

As the Dr said to EeFall, it may be that for some of us, our receptors are forever screwed and we cannot go back to these drugs regularly. For years, I could get by with 1 or 2 days of pramipexole without incident. I was hoping for a 5 to 7 days from this. 5 would have been great - 5 on it, then 2 on methadone, and back to it. But I had increased symptoms by day 5 and pretty bad ones on day 6. Seems like I'd only get 3 days out of this. Since it takes time to build up in your system, it doesn't make sense to do it. I'd spend 2 days getting it built up and would only get one day out of it. And given how it awakens me frequently, even with a sleep aid, I'm not sure how I benefit. I guess it doesn't cause the depressive symptoms that pramipexole did, so that's good....just not sure that's enough.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Neupro Patch

Post by Polar Bear »

If it means going through the same every 7 days then it also means that regularly you're having a lot of pretty severe symptoms plus no decent sleep. Hmmm.. and also trying to work.
If you use pramipaxole do you take an anti depressant to counteract the depressive symptoms.
Given your reaction to different medications it cannot be easy deciding to bring anything extra into the mix.

I think I will look for d-ribose tomorrow. It has been mentioned several times in a positive way.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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