Neupro

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

His object is to increase the patch until symptoms are controlled. He even talked about 6 mg. Once symptoms are controlled he will begin withdrawing the mirapex,
lower the dose and add Lyrica. So far as I can determine He has lots of rls experience. Because I responded favourably for a short period of time to the 2mg patch, I
can't help wondering if the later response is augmentation. If it is and I increase the dose, I may have great difficulty getting off both mirapex and the patch.

ViewsAskew
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Re: Neupro

Post by ViewsAskew »

Orrel, I know I am not a doctor, but I am relatively positive that you won't know anything until the pramipexole is stopped. I'm not sure he really understands this. Once you have augmented, you remain augmented until the drug that caused it is completely stopped and you go through and 5 to 20 day withdrawal period.

I've read almost every article about augmentation that I am aware of. I've never seen this doctor's approach used.
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.

Orrel
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Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

A newer approach to getting off a DA like mirapex is to switch to a less augmenting one like Neupro. See Rustsmith's posting of Nov.24/14 under Getting Off Mirapex.
My specialist's approach seems based on this newer approach with a few of his own tweaks. I am not entirely comfortable with these personal tweaks and I
basically agree with you. The 2 mg Neupro patch will work better once the mirapex is out of the system. BTW, you might be surprised at my specialist's rls
credentials.

Rustsmith
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Re: Neupro

Post by Rustsmith »

A newer approach to getting off a DA like mirapex is to switch to a less augmenting one like Neupro. See Rustsmith's posting of Nov.24/14 under Getting Off Mirapex.


In case you have a hard time finding this post, here is a link - http://bb.rls.org/viewtopic.php?f=4&t=9062&hilit=+getting+off+mirapex

As I understand the concept of using Neupro to get off of Mirapex, the issue has to do with the changing concentrations of DA that is in the bloodstream throughout the day. There is a cyclic swing in the concentration from natural sources. We have symtoms when the dopamine levels drop below some threshold. If you supplement these levels by taking Mirapex pills several times a day, you start to get a swing where the DA high concentrations help to alleviate WED symptoms, but these highs are necessarily followed by lows where the symptoms come back with a vengence. As you take larger and larger doses of Mirapex to keep the minimums above the threshold, the body adjusts so that the low values keep falling below that minimum threshold level. This is augmentation and the problem with getting off of a DA is that when you remove the supplemented DA, you stay below the threshold until the body adjusts and starts remaking its own dopamine at your normal levels again.

The idea of Neupro is that the dopamine is gradually released throughout the day rather an the high and low concentration spikes that occur when you take a pill. This helps to avoid the artificial highs and lows that result in WED symptoms and keeps a the dopamine swings more like "normal" while hopefully staying above the threshold.

Of course, although this may reduce the probability of augmentation, it doesn't mean that it is not possible if the body adjusts to the gradually declining Neupro levels that are released between patch changes. The patch also does not guarantee no WED, as I have found out after a couple of WED episodes only to find that the patch was only partially adherent.

For more information on this, I highly recommended the webinar presented last August by Dr Allen on augmentation. It can be found on the Members Only page of the Foundation's website.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Orrel
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Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

Thank you for the explanation. Those who are concerned about the patch not adhering should consider Tegaderm Film made by 3M to cover it.
They work brilliantly.

ViewsAskew
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Re: Neupro

Post by ViewsAskew »

In your initial post, in the other thread, Steve, you said this was for mild cases.

What defines mild?
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.

Rustsmith
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Re: Neupro

Post by Rustsmith »

I believe that I said "moderate cases of augmentation". By that, I meant cases where the pramipexole dose was around 0.5mg and the augmentation had not occurred immediately after starting pramipexole. I would think that the cases we hear about where the person is on 1.5+ mg or they augmented within a week or so should get a different approach.

But, that is all my opinion, so I hope it sounds reasonable. It certainly has worked for me.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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

Post by ViewsAskew »

Rustsmith wrote:I believe that I said "moderate cases of augmentation". By that, I meant cases where the pramipexole dose was around 0.5mg and the augmentation had not occurred immediately after starting pramipexole. I would think that the cases we hear about where the person is on 1.5+ mg or they augmented within a week or so should get a different approach.

But, that is all my opinion, so I hope it sounds reasonable. It certainly has worked for me.


Thanks for the clarification on mild vs moderate and your perception of what that might mean.

I hope I am completely wrong on this....year after year, we learn more and more about how many problems augmentation creates and just how many cases there are. In 2003-5 or so, it was believed that only 10% of people on ropinerole would augment and that pramipexole was around 20%. Each year that climbed. Many of us paid an ultimate price. Not necessarily anyone's fault, it's definitely created many problems for many people.

While I want to hope that the consistent dosing may resolve problems, looking at history, I have some ambivalence! I am happy it's worked for you, Steve, and dearly hope it works for Orrel. I can't fathom - but I am not a doctor! - how continuing on the pramipexole makes any sense. The longer you are augmented (and you remain so as long as you take the med that causes it), the worse the problems get. It seems that getting off of the pramipexole quickly would be tantamount. I'd like to understand how staying on it is helping.
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

Views: What you say about pram. makes a lot of sense. I don't think the patch will work properly as long as the augmented
pram is in the system. I am wondering what would happen if I gradually weaned myself off the pram. over a period of four
weeks by reducing it by .125 mg each week using the patch to minimize symptoms. I'm reluctant to try this because I don't
know how it would turn out. But if remains a tantalizing idea.

jakesmom
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Re: Neupro

Post by jakesmom »

I don't say this to be discouraging, but you are prolonging the inevitable. I tried to taper, I was miserable. I called my doctor, told her I was going to go cold turkey. I chose to rip the bandaid off. It was bad, but I honestly believe the only way to stop augmentation is getting that stuff out of your system. It's hard, but once I had Mirapex out of my system, my WED symptoms were less than they had been in years.

I wish you guys luck in whatever you decide, but I will always stand by cold turkey being the only way to go!!

ViewsAskew
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Re: Neupro

Post by ViewsAskew »

While many people do not suffer any additional issues, some of us seem to correlate permanently worsened WED with augmentation. My gut tells me that is ALL cases, the sooner you stop it, the better off you are. I don't know if some internal switch gets flipped after a certain point or if it would happen anyway, but given that it's a possibility, stopping it ASAP seems the best choice.

I really wish I understood the logic of keeping a person on the meds that are causing the problems! Then I might go, OH, DUH! But, from my perspective (and definitely a perspective colored by my own horrible time with augmentation and knowing how awful it has been for so many others), it really doesn't make sense.

Orrel, I know what I would do - but I am not you. How much pramipexole - total per day - are you taking now?
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.

Orrel
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Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

I have been taking a total of .5 mg (.25 mg at around 6 p.m. and .25 mg at around 9 p.m.) This is in addition to the 2 mg. patch which was recently
increased to 4 mg as I was experiencing breakthroughs (often until I got up between 7 a.m.and 8 a.m.) The neuro wants me "stable" before withdrawing the pram.
I often wonder if the augmented pram contributes to the breakthroughs. The total DA I take seems rather high.

ViewsAskew
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Re: Neupro

Post by ViewsAskew »

You know, I was thinking about what Steve said regarding how he'd define moderate argumentation. I realized today that this doesn't work. There are some people for whom .25 mg never worked and they needed 1 mg to get any relief. Other people, such as myself, had complete relief with .125 mg and likely could have used less. By the time I was up to .5 mg, it had been raised at least 3 times - from .125 to .25, to .375, to .5.

Length of time augmented, how much early, how much more severe - these need to be the markers we use.

I had WED a couple times a month. At .125, I started having it every day (I took it for PLMs, not WED) at 10 PM. When it started at 8 PM, the doc had an increase to .125 twice a day, for a total of .25. Then it started at 6 PM. Initially, he just had me take the first dose earlier, but eventually, it was 4 PM. So, we added more. And so on.

But, I was still taking a relatively small dose, all things considered. And, because it was a split dose, I actually didn't exceed the .25 per dose range!

Now, I know that my case is atypical, to say the least! But, it seems to me that what we'd need to take into account would be:
1. How long did it take to augment? If less than 16 months (I think that is what was considered a typical onset but it could have changed), then we might act differently. If it's much longer, say 5 years, we could definitely be less concerned.

2. How severe is the augmentation? Is it an hour or so earlier, but no more severe? Is it both more severe AND earlier? How much earlier - an hour or two, several hours, or all day? How much more severe?

3. How long has it been happening and was it gradual or fast? We often do not realize it at first, so we may not know exactly when. If it was quite awhile ago and it's really not that bad, we likely need to act differently than if it ramped up quickly and it driving the person crazy.

4. Have other symptoms started, such as PLMW. PLMs during wakefulness appear to be (at least from reports here) one of the signs that augmentation has moved into the severe side of the scale.

5. How well is the drug tolerated in general? I hated just about all aspects of DAs. From the crazy dreams to passing out no matter where I was when the meds started to work to crying jags for no reason, those are just a few of the side effects I experienced. Some people LOVE them - they work great. If they are causing a lot of problems, even if the augmentation is only mild, maybe a switch is the best course of action.

Seems like a lot of factors, but it occurred to me that me asking Orrel the dose wasn't really enough to make a decision and wasn't all I'd take into account.

Orrel, given that you are on what is considered a safe dose to stop cold turkey, that is what I would do. But, that is me! The reason I'd do it that was is that you''ll know relatively quickly if the pramipexole is contributing to your current dosage issues, because it will likely get a bit (to a lot) worse quickly and then things should get better within 5 to 14 days if the theory is correct. And, yes, you may suffer some for those days, but then it really is over. And you'll know how much you need of the patch.

Now, if it isn't over in 14 days, give or take a couple, then that brings up a different set of issues. Either you were augmented more severely - and it can take more like 20 or so days in those cases - or the switch may not be working for you. I'd give it a full month if there are no other issues, then I'd want a new solution.

But, ultimately, it's up to you! And, if you do that, you have to be comfortable explaining to your doc why you didn't do what he said. Some of us do not want to do that.

If you do it the other way - reducing .125 a week - you potentially have a full month of misery and then you STILL have to go through the 5-14 or so days of increased symptoms after you stop it. Then again, maybe that worsened period isn't supposed to happen with this approach - I honestly do not know.

Another option would be to reduce it .125 for 3 days, then another .125, and so on. It would be a lot faster to get through and you'd be able to tell if the patch was covering or not. You could always reduce twice and then stop it all.

Whatever you do, remember this - it really is all temporary! It seems awful during it - and it is! But, in the end, it's only a month or so at the worse and at the best, it's a week or so.
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.

Orrel
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Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Post by Orrel »

I want to get off pram. asap but fear the withdrawal process.I tried cutting back slightly, taking .375 mg instead of .50 mg. My rls went crazy, so I stopped the process,
hoping to find some covering agent. Opioids are not a possibility where I live, so I was attracted to the newer idea of using a longer acting DA (Neupro) to cover the
symptoms of getting off a shorter acting DA (pram) I have actually tried this. I have reduced my total daily .50 mg dose to .375 mg the past two nights with no
problems. So far the 2 mg. patch is covering symptoms. I am loath to use the 4 mg. patch as all the literature says that 3 mg. should be the maximum dose.
The higher the dose, the greater the chance of augmentation. Also, according to the literature, those with cardiac concerns should be careful with the patch.
That would be me. Before Christmas, I ended up in the local ER and did not leave the hospital before receiving a new toy, a defibrillator. So, I'm really wired now.
I realize that before the pram. withdrawal process is over, I may have to go to the 4 mg. patch.

ViewsAskew
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Re: Neupro

Post by ViewsAskew »

Even if you needed to go to a 4 mg patch, the withdrawal is relatively short, all things considered. IF the Neurpro covers it, and hopefully it will, you then would likely be able to go down to a 2 mg one when it's over. Or maybe even a 1 mg.
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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