Odd reaction to Neupro

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knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Odd reaction to Neupro

Post by knoxtnhorn »

Apologies for starting a new thread. I didn't want to piggyback anyone else's thread with my own issues.

Quick background:
Pramipexole - 3 years.
Requip - 4 months.
Both only taken before bed to assist with sleep. Mixed results at night and no help during the day. The idea of trying to take a nap after a sleepless night was out of the question.

Started Neupro about 3 weeks ago. 2mgs of the slow-release/24 hour patches.
I've noticed a lot of improvement during the day as I am, at times, able to take naps. Something I hadn't been able to do for a really long time.

My issue is with nights. For some odd reason, the med either works really well or not at all on any given night. I can't figure out the pattern or why it varies. There's, literally, no in-between. I'll either sleep like a baby OR, more frequently, go all night without sleeping. What's even weirder is that the sleepless nights are the result of either just feeling wide awake OR having my legs flop around for hours. In other words, I'm unable to sleep because of the restless legs some nights. At other times, my legs feel fine but I'm just wide awake, staring at the ceiling. Sample week:

Mon - 8 straight hours of perfect sleep.
Tues - Restless legs; almost no sleep.
Wed - Legs feel fine but I can't sleep.
Thur - Restless legs; almost no sleep.
Fri - 9 straight hours of sleep.
Sat - Legs are fine; no sleep.
Sun - Legs are fine; no sleep.

It's not diet. It's not lack of or too much exercise. I'll just lay down at night and know rather quickly that I'll either sleep all night or be up. I don't understand how a slow-release med can either work or not without anything in-between.

Anyone else have these types of issues?
I'm a teacher so dealing with this over the past few months hasn't been the biggest deal in the world as I'm out of school for the summer; however, there's no way I can effectively do my job if I'm literally missing entire nights of sleep.

Rustsmith
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Re: Odd reaction to Neupro

Post by Rustsmith »

First off, you did right to start a new topic. As one of the board moderators, Thank you.

If you are rotating the application site to various spots around your body, is there a relationship with the location site? When I was on Neupro I found that I have more problems when the patch was on my lower back. It worked well on my shoulders, hips and legs, but not the small of my back.

For me, it did not happen immediately after I started with Neupro, but I started to sleep less after I had been on it for a few months. I went from averaging 7-8 hrs of sleep each night to 3-4 hrs. It was a gradual change over time and even though I have been off of Neupro for about a year, I am just starting to return to normal. Whether this was due to the Neupro or a starting sign of augmentation, I cannot say. I was able to stay on Neupro for 15 months, which was longer than my first experience with pramipexole.

The sort of odd thing however is that when my RLS was untreated, I would have a problem falling asleep before about 1AM, but then could sleep until 8 or 9A. With a combination of Neupro and 900mg gabapentin, I could fall asleep when I went to bed, but would wake up at 2 or 3A.
Steve

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, and are not medical advice.

stjohnh
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Re: Odd reaction to Neupro

Post by stjohnh »

It sounds very much like you have application issues of the neupro. The skin and condition of the skin is part of the mechanism that is used to transport the medication into your blood. Correct application and good adhesion is necessary for the medication to work properly. Be sure the application site is clean, dry, and oil-free. Be sure to apply it on warm skin and make sure that you hold in place for at least 30 seconds with a warm hand after application.

I don't use neupro now, currently mirapex, but have used it in the past. There is a sleep issue with most people that have restless leg syndrome, it usually is trumped by legs jumping around, however when the legs jumping is controlled the insomnia frequently becomes more obvious as an underlying problem.

I also believe that the dopamine agonists all cause some insomnia in and of themselves, and my impression is that neupro is worse than mirapex or requip in that regard.

Once you get consistent control of your jumping legs, I suspect you'll find that the insomnia remains and you will probably have to take additional medication or medications to help with insomnia itself.

Neupro causes many more rashes than most topical medications. Many people stop at within a month or two after starting it due to uncontrollable rash problems. Be sure to read the patient sheet that comes with the medication and rotate as instructed. I found that I could not use my stomach at all due to rashes. I was able to use the medication as long as i used only my upper chest, upper arms, and thighs.
Blessings,
Holland

ViewsAskew
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Re: Odd reaction to Neupro

Post by ViewsAskew »

I seem to remember reading a study that found different places on the body resulted in different absorption. But, can't remember what was the best place...

Seems that you more often have no RLS but cannot sleep. Many of us find that is true as already noted by Holland. Some of us use gabapentin for that issue. I find that an opioid works better than gabapentin, but both help counteract this issue.

And, I, as a moderator, am also very glad you started a new thread - thank you!
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.

debbluebird
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Re: Odd reaction to Neupro

Post by debbluebird »

Regarding absorption, it is probably, fat vs muscle and also thickness of the tissue, in an area, just like some medications are injected into muscle, while others into fat. So for the patch, I would pay attention as to where it works best.

Polar Bear
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Re: Odd reaction to Neupro

Post by Polar Bear »

I am one of those for whom insomnia is almost as big a problem as my rls symptoms.
Medication will for most of the time keep rls under control, I find that my walking about time is likely to be the evening more than the night.
If rls is going to happen at nighttime it's usually within an hour of lying down. And so, up I get again and do something, possibly reading my kindle whilst pacing.
This is despite having taken clonazepam to help me sleep. The sleep aid definitely does not override the rls symptoms.

Last night/this morning, it was 4am when I settled to sleep.
At 5am I could feel a light tapping on my shoulder (obviously I had been snoring).
Without a word I got up and within seconds was in the guest bedroom, and slept until 10.30am. i.e. 5.5 hours.

Now.... at 5am I could have said a lot but no point in waking us up fully.
Thing is -- when my husband snores I go into the guest bedroom, when he indicates that I am being 'noisy' I go into the guest bedroom.
I actually sleep better alone.

knoxtnhorn --- The point I am making is that I do feel that sleep is easier and better when I sleep alone. But I don't want to take that route.
I wonder if you sleep alone or with your partner, if this makes any difference in the quality of your sleep.

I do hope that you are successful with positive placement of your patch, keeping a record of the position/result.
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

Rustsmith
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Re: Odd reaction to Neupro

Post by Rustsmith »

knowtnhornwrote: My issue is with nights. For some odd reason, the med either works really well or not at all on any given night. I can't figure out the pattern or why it varies. There's, literally, no in-between. I'll either sleep like a baby OR, more frequently, go all night without sleeping. What's even weirder is that the sleepless nights are the result of either just feeling wide awake OR having my legs flop around for hours. In other words, I'm unable to sleep because of the restless legs some nights. At other times, my legs feel fine but I'm just wide awake, staring at the ceiling.


Dr. Allen at Johns Hopkins has been looking into the issue where a dopamine agonist (like Neupro) is used to treat RLS and is very effective in the control of an individual's urge-to-move. However, for some individuals there is still an issue of insomnia that the DA does not fix. His studies appear to have found that in addition to a problem with dopamine levels, some of us also have problems with the levels of glutamate, another neuro transmitter. His theory is that glutamate levels are supposed to change throughout the day due to circadian rhythm changes and that these changes trigger the abilities to fall asleep and wake up. However, for some with RLS the levels do not change, so we end up with a form of insomnia and even worse, we often do not respond well to any of the normal sleeping pills. This may also help explain what gabapentin is often useful in helping some of us fall asleep when other meds are completely ineffective.
Steve

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, and are not medical advice.

debbluebird
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Re: Odd reaction to Neupro

Post by debbluebird »

I was up until 5 am with insomnia this morning. I fell asleep sometime after 5, but had to get up at 9 am. I had taken an extra Oxycodone and extra Kratom. I figure it was the Kratom.
The first time I took Mirapex, a DA, my sleep was reduced by 3 hours. This last time I tried to take it, sleep was reduced by 6 hours. I was only getting 2 to 4 hours.
I will never take a DA again. For me they no longer work.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Post by knoxtnhorn »

Update!!!

Sorry for the delay and thanks for all the responses. I wrote my initial post on Sunday night in the midst of probably the worst night of my life as far as RLS and insomnia goes. Family and I are on vacation and we were at a hotel in El Paso. Got so bad that I eventually decided just to get up and drive to look at the border. Back home I have a "man cave" for lack of a better term so I can deal with issues w/o waking up family members. Not so easy in a hotel. I know I woke my wife up a couple of times from the sound of me punching my legs.

Anyway, we get to Phoenix and I discuss my issues with my sister-in-law who's a pharmacist. Like some above have mentioned, I believe I was having absorption issues, though, in my case, it may have been as to my lifestyle. On any given day, I'm either playing soccer, biking, or doing yard work. Her theory was that I was "killing" the effectiveness of the patch due to overheating and sweating. In other words, putting the patch on and then playing soccer for 2 hours in 95 degree heat was either causing absorption of the medicine in too rapid of a manner or offsetting the medicine entirely. The last two days, I've decided to put the patch on (different places than before) AFTER any strenuous activity. For me, this means the early evening. So far, the last two nights, have been ok.

Hopefully, the advice given by others on here as well as my own revelation will help folks in the future. Occam's Razor. The simplest explanation might be the best. Make sure the meds are properly entering your system before assuming they won't work.

I'll continue to monitor the insomnia issues. As long as my legs aren't flopping, I can deal with lack of sleep at times.

knoxtnhorn
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Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Post by knoxtnhorn »

Update #2. I'm not cured.

At this point, I have no idea what's going on. I've had the following nights since my post above...Though, I was on Pacific Time, I'm going to put all times below in EST.

Wednesday - Lay down at 12AM EST. Fell asleep at 2AM. Woke up at 5AM. Napped on and off for a couple of hours.
Thursday - Same.
Friday - Hotel in Flagstaff. Literally never went to sleep. Spent several hours just sitting by the pool.
Saturday - Hotel in Albuquerque. Slept from 1AM til about 4AM.
Sunday - Hotel in Lawton, OK. No sleep again.
Monday - Hotel in Memphis. Slept from about 5AM til 7AM.

Tonight is Tuesday. I think I've had about 5 hours of total sleep over the past 4 nights. Having gone from Pramipexole to Requip to Neupro now, I'm not really sure what to do next. I noted earlier that, as a teacher, these issues are somewhat manageable right now; however, there's no way I can continue to live with this starting two weeks from now.

I noticed there is a Quality Care Place a couple of hours away. Guess that's next unless someone has any advice.

Thanks for listening.

Rustsmith
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Re: Odd reaction to Neupro

Post by Rustsmith »

knoxtnhorn wrote: I noticed there is a Quality Care Place a couple of hours away.


Going to a Quality Care Center will definitely help clear things up for you. However, you need to be aware of the fact that it can take a while to get an appointment with one of the doctors at these centers because there is more demand than they have hours available.

I would therefore advise you to call for an appointment ASAP, because it might take you a couple of months to get in.
Steve

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, and are not medical advice.

ViewsAskew
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Re: Odd reaction to Neupro

Post by ViewsAskew »

I admit to skimming here - so forgive me if I miss something.

I think a Quality Care Center is very important if you can get there. I have to wonder given that you've been through three dopaminergic drugs if you have augmented. Your lack of sleep sounds to be related to the RLS symptoms, not insomnia - is that right? In my experience, once you've reached a point in augmentation, it can get really crazy and nothing makes sense. It works sometimes, not others, and things are topsy turvy.
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.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Post by knoxtnhorn »

Thanks ViewAskew. You've hit the nail on the head. I mean absolutely no disrespect to anyone on here with what I'm about to say but it pertains to where I am in my treatment. It scares me to death to read about folks that are on high doses of dopamine agonists as well as those that have had to turn to narcotics. I'm relatively young and I just can't imagine spending the next 50+ (or whatever) years upping meds or turning to narcotics. The thought terrifies me. I'm at the point where I'd just about rather deal with what I have med-free than up the ante, so to speak. Granted, I'm writing this in the early evening before I turn to the hell of trying to get to sleep tonight.

I have a doctor that seems sympathetic but has probably come to the end of his expertise on the matter. I'm pretty sure he's going to refer me to a specialist. The ONLY thing that has ever worked in my case has been the rare times that I've been prescribed Hydrocodone for various sports injuries. Let me make it clear that I'm speaking of about 5 times over the past 5 or so years when I've had a short-term prescription of, say, 20 pills. It's actually a running joke with my wife in that, whenever I've been injured bad enough to get a painkiller prescription, then it's time for us to sleep in the same bed. (I sleep in my own room due to the RLS.) Unfortunately, as many on here probably know, I can't very well ask my doc for a prescrip because, in his mind, my legs are just a little jumpy.

Anyway, I just wonder how bad my symptoms would be if I was able to just drop the neupro/Pramipexole/Requip over the span of a couple of weeks. After what I've been through the last 3 weeks, I just can't imagine it would be any worse.

knoxtnhorn
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Joined: Wed Feb 12, 2014 12:05 am

Re: Odd reaction to Neupro

Post by knoxtnhorn »

I'm not sure my previous points made any sense. I meant to state that I'm weary of trying yet another medication but would like to have the ability to attempt to completely ween myself off of the Neupro but fear that doing it cold-turkey would be a disaster. If I was able, I'd ask my doctor to prescribe me a small dose of pain medication (Hydrocodone) to bridge the gap; however, in this day and age, one is never to ask a doc for painkillers lest he/she be black-listed.

ViewsAskew
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Re: Odd reaction to Neupro

Post by ViewsAskew »

Oh, I hear you! You are where I was when I started down this road. Now I only likely have 35-40 years left, lol, but I STILL have the same thoughts you do.

You can try to cut back....in my experience if you are indeed augmented, this will not do much good. Most of us find that cutting back really isn't better than cold turkey - it takes longer but is just about as miserable. If/when you stop the drug completely - whether you taper or stop cold - it will likely make your symptoms really nasty for awhile. But, it will pass in around 5 to 20 days. Then you can assess how nasty it really is.
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.

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