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
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Re: Neupro

Postby Orrel » Sun Jan 11, 2015 12:01 am

[quote="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.[/quote

This is my thinking as well. I hope the patch continues to work after the pram withdrawal. Augmentation notwithstanding, I seem to
tolerate DA's quite well. The other drugs don't sound too nice even though they may not augment. The only issue seems to be
insomnia after about 4 a.m.

peanut1
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Joined: Sat Jun 04, 2011 8:06 am

Re: Neupro

Postby peanut1 » Sun Jan 11, 2015 9:58 pm

I was on neupro for a short time. the 1 mg initially helped me sleep then I went to 2 mg and I was up all night. I went to something else for a couple of months and the WED adapted so I went back to neupro on 1 mg. which didn't do anything. The doctor wants me to go to 3 mg. At what point should I be concerned about augmentation?

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

Re: Neupro

Postby Orrel » Mon Jan 12, 2015 2:02 am

I would try the 3 mg patch and see what happens. I have found the 2 mg patch doesn't work too well and my neuro wants me to go to 4 mg
even though the max for WED is 3mg. I am wondering if the augmented pram. which is still in my system is hindering the patch.
The WED Foundation has some good info on augmentation which you can access under Members Publications. We all really need a neuro
who understands augmentation to help us determine whether we are experiencing it. See also Rustsmith's posting about augmentation on
this Discussion Board.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: Neupro

Postby peanut1 » Mon Jan 12, 2015 4:42 am

That would make sense to take a drug holiday and clean the body out to introduce another drug. I think I've read when you get on an opioid for that if I'm not mistaken. I tend to agree with Ann that if the drug is augmenting get completely off. I don't know how long they recommend to be off until you start something else. I read the entire thread on augmenting and it started getting maybe a little concerned or paranoid about the patch.

ViewsAskew
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Re: Neupro

Postby ViewsAskew » Mon Jan 12, 2015 8:52 am

peanut1, when you said you were up all night - was it from side effects or from WED?
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.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: Neupro

Postby peanut1 » Mon Jan 12, 2015 2:21 pm

Ann,

I'm not sure. When I took the 2mg it felt like the WED with that bug eyed feeling, but I didn't need to thrash the legs. When I took time off and went back to the 1 mg, the legs were calmer and I was able to rest better, but I still didn't get any sleep. I'm hesitant to got to 2 or 3 mg. if I'm starting to augment. I'm okay with taking other meds (ie opioids) and upping the dosage until they don't work, but the DAs scare me a little.

Kathy

Rustsmith
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Re: Neupro

Postby Rustsmith » Mon Jan 12, 2015 3:40 pm

Kathy, if the 1mg patch is working to keep your legs calm then you might want to consider the combined therapy that I am currently on. I apply a 2mg patch in the morning and then take 600mg of gabapentin about an hour before bedtime. The Neupro controls the urge-to-move part of the WED and the gabapentin allows me to get to sleep. The gabapentin not only allows me to fall asleep quickly but also allows me to go into a deeper sleep than I would without it.
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.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: Neupro

Postby peanut1 » Mon Jan 12, 2015 7:32 pm

Steve,

Good idea. However, I've been on gabapentin in the past and it does not work that well for me now. HOWEVER, it wouldn't hurt to try the gabapentin AND the 1mg neupro patch to see how that works. I've been reluctant to use different combinations of meds since I've gotten ill doing that in the past. Keep in mind that I was doing my own mixing rather than consulting my doctor. I also know that I need to eat a big meal if I take gabapentin as it can upset my stomach.

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

Re: Neupro

Postby Orrel » Thu Jan 15, 2015 10:36 am

My neuro wants me to stay on the .50 mg of pram until April and increase the patch to 4 mg. I want off the pram asap and am concerned about raising
the patch to 4 mg. fearing augmentation. I decided to do wean myself. For six days I reduced the pram to .375 mg using the 2 mg patch for any symptoms.
It worked out rather well. I lost more sleep to insomnia than to rls. Last night I went to .25 mg of pram. I had lots of rls. I am wondering if I should up
the patch to 4 mg at least temporarily. I imagine the closer I get to taking no pram. the more rls I'll have. I guess that I won't be making a
smooth transition from one DA to another.

Rustsmith
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Re: Neupro

Postby Rustsmith » Thu Jan 15, 2015 11:55 am

I seem to remember that you said that your neuro had excellent credentials WRT treatment of WED. However, I can't help wondering if this isn't the time for you to seek a second opinion. The combined dose of DA from 4 mg Neupro and 0.5 mg pramipexole is a lot. If your doctor wants on that for another three months just to avoid breakthroughs, it seems to me that this is not all that different from simply increasing the pramipexole dose. Eventually your brain is going to have to get used to lower DA concentrations and the transition is probably going to involve more than just the occasional "breakthrough".

I do not remember which doctor said it during one of the Foundation webinars last fall, but the statement was made that the goal of treatment a dramatic reduction in the symptoms and not complete, 100% elimination.
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
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Neupro

Postby Orrel » Thu Jan 15, 2015 2:42 pm

I agree that 4 mg of the patch and the pram that I have reduced from .50 mg to .25 mg is a lot of DA. That is why I am loath to increase my patch
dose from 2 mg and why I am reducing the pram. All the literature I have read suggests that 3 mg should be the max for rls. I thought, from what
others have written, that the transition from a shorter acting DA like pram to a longer acting one like Neupro should be relatively easy. My
experience last night suggests a more difficult period as I continue to reduce and eventually eliminate the pram. Maybe a temporary
increase of the patch to 4 mg would help.

ViewsAskew
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Re: Neupro

Postby ViewsAskew » Thu Jan 15, 2015 8:29 pm

Here's the rub - a transition to the patch would be easy IF a person wasn't augmented. And, in cases of mild (maybe even moderate) augmentation, it would work without much, if any, issue. But, when you stop pramipexole and you have passed into the type of augmentation where the symptoms are worse when you stop the drug, the other drug has to compensate for that.

I just wish we had some case studies or research to guide us here. It's relatively new territory you're in, Orrel.

The doc may be a first class WED doc - he or she may have a theory that is being tested out on patients. That's how most of this happens! They hypothesis might only work in certain "types" of augmentation.

For a long time, specialists have been divided into two groups related to augmentation.

Group 1 felt that if symptoms occurred a bit earlier or were a bit more severe, that you just upped the dose at least once, maybe a few times. This group felt that you didn't bother with this until the person was having full-blown augmentation.

Group 2 felt that once the augmentation spiral started, you eventually had to stop them and stopping them was harder the worse the augmentation, so you might as well switch them now.

In this study, by the way, in one year, people already had augmentation with rotigotine. It was just under 3%. So, people CAN and DO augment quickly on this drug.

This study is of 28 people, but they had severely augmented and had success with rotigotine. In the paper, it says that,"The initial dopaminergic medication was fully terminated in one step and substituted at the same time by rotigotine 1 mg/24 hours."

Both of these are worth reading.

In general, this 5 year study shows that there IS augmentation with the patch - 24 percent had confirmed augmentation and 13 percent had clinically significant (or whatever term they used). It's not as high as with other DAs, but it exists.

I couldn't find anything in my brief search to address treating augmentation with rotigotine without first stopping the problem DA other than what has been cited already.
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

Postby Orrel » Thu Jan 15, 2015 10:49 pm

Thank you for the info. It is interesting but confusing. As I am rather concerned about dropping the pram completely, I'll continue my
reduced dose of .25 mg along with the 2 mg neupro patch. Interesting that in the study of 28 severely augmented people the initial dopaminergic medication
was full terminated in one step.

ViewsAskew
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Location: Chicago

Re: Neupro

Postby ViewsAskew » Fri Jan 16, 2015 4:00 am

Orrel wrote:Thank you for the info. It is interesting but confusing. As I am rather concerned about dropping the pram completely, I'll continue my
reduced dose of .25 mg along with the 2 mg neupro patch. Interesting that in the study of 28 severely augmented people the initial dopaminergic medication
was full terminated in one step.


It always has been with any prior methods. Always.

I can only assume my experience is common. One I augmented, I remained augmented and that affected everything.

1. Doc tried Sinemet. Since I was already augmented, even though I took no pramipexole the day I took the Sinemet, I had 36 hours straight of the worst WED/RLS of my life.

2. Doc tried ropinerole. That was very similar to the Sinemet. Horrible reaction.

3. Doc tried gabapentin. Even though it wasn't a DA, the symptoms went through the roof.

Then I reduced the pramipexole, myself, from .75 mg to .125 mg. In most ways, it was the same. I was already severely augmented with 24/7 symptoms, so taking less didn't matter. I still didn't sleep, but at least I was taking less.

Then I tried to stop the pramipexole myself, cold turkey. Symptoms were so horrible I caved and stated taking it again after 5 days.

Then I landed some codeine. I went through a day's allowance in a few hours - the WED was temporarily at bay - and that is how I figured that an opioid could work if it were strong enough.

My point is that once augmented, the period when you stop is the really BAD period. Up until then, sure, you need more of the drug and if you do not take it, things are worse, but if you take more, it's OK again. But, when you stop it, that is when you really pay.

So, all of the methods for the last ten years - with moderate to severe augmentation - have been to stop the DA cold turkey (unless you were taking a higher dose) and use an opioid. And, it makes sense to me. You don't get the worst of it until you do! You just keep it at bay and put it off. But, eventually, it comes.

Now, could be something about the rotigotine where the docs think that it will mitigate some of this boomerang effect of stopping the DA. I do not know. I'd love to find out.
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.

peanut1
Posts: 277
Joined: Sat Jun 04, 2011 8:06 am

Re: Neupro

Postby peanut1 » Wed Jan 21, 2015 4:38 pm

Orrel,

Personally, I tend to agree with Ann and have had similar experiences with augmentation. I would play it safe and get off the drug and onto something else that is safer re: augmentation such as the opioids. I would definitely trust my own body vs. the doctor and regardless of how much WED experience he has!

Ann,

Thanks for bringing up the 2 schools of thought. I have struggled on this with my doctors as well.


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