Neupro Patch

[Polar Bear]

A great post explaining all very clearly.
I really hope you have a good outcome.

[pamndorr]

Thank you...I will let you know what happens. The people here are the only people that really understand what we truly go through. My husband doesn't even get it. He wants me to snap out of it and has started to ask why I can't remember little things. All I can do is look at him and tell him to try the drugs and no sleep and see how he does. Nobody can understand this unless they live it.....pretty sad.

[jakesmom]

Pamndoor,

I cannot thank you enough. 3 days ago my neurologist changed my meds from 1-3 mg of Mirapex to the Neupro patch. I have slept 4 hours in the past 2 days, eventhough I took Klonopin and Lunesta at bedtime. The withdrawls are HORRIBLE. My dose for the patch was to start at a 2mg patch daily. If that didn't control my symptoms (it did on day 1 until the previous days Mirapex wore off) then I was to go up to a 4mg patch. If that didn't control my symptoms I could use both for a 6mg dose. So, don't worry that you are taking too much at 4mg.

Last night was horrible. My skin crawled, I had to lie in bed kicking my legs hoping I would exhaust myself, the anxiety was indescribable. I wore a 2mg patch yesterday, but last night I removed it and used a 4mg. I was reading your story and breathed a sigh of relief that I was not losing my mind. The day I changed meds, I asked the pharmacist if I would have any withdrawls and he told me no, that I was just changing to another drug in the same class and he didn't show any known symptoms in his computer. Did he not know or was he not allowed to forewarn me of the horrors to come? I don't like either possibility.

Thank you for relating your experiences. I am eagerly awaiting the day when you say the withdrawls are over so I will know there is an end in sight.

[rthom]

jakesmom, is there any way you can be in more control of your med change? I found it really important to remember that we know our bodies and experiences best, my dr thankfully supports this thought. When we are at home sufferieng they are asleep olbvious to the hell we experience and only can go by what others have told them accurate or not to our circumstance, so it's important we be in control of what happens to us (be our own ambasadors). If your meds are making it far worse--believe your body and try to work with it--that sort of thing---we are all here for you and if you have any questions.....

[jakesmom]

I needed to get off Mirapex. I was augmenting and my discomfort had become an all day event and had spread into my arms. I also experience episodes of passing out due to sudden drops in blood pressure and in the 8 years I have been on Mirapex, I have gained 80 pounds . I don't think Mirapex withdrawl was on her thoughts when she made the change. I read many stories of people who tried to titrate down and they seem to have had the same severity of symptoms as those who stopped cold turkey.

I agree, unless you have spent an agonizing evening literally walking and walking and walking in our shoes, it is impossible to understand how bad this condition can be.

[rthom]

Hope it goes as easy as it can for you, we are here to listen even if it doesn't seem to have any reason--sometimes just getting through the nights are the point. Good luck with it.

[ViewsAskew]

I needed to get off Mirapex. I was augmenting and my discomfort had become an all day event and had spread into my arms. I also experience episodes of passing out due to sudden drops in blood pressure and in the 8 years I have been on Mirapex, I have gained 80 pounds . I don't think Mirapex withdrawl was on her thoughts when she made the change. I read many stories of people who tried to titrate down and they seem to have had the same severity of symptoms as those who stopped cold turkey.

I agree, unless you have spent an agonizing evening literally walking and walking and walking in our shoes, it is impossible to understand how bad this condition can be.

My guess is that the doc doesn't fully understand augmentation. Most specialists with a good understanding believe that the only way to handle it is to use an opioid. You may only need it for a week to a month, but it's almost impossible to just ride it out. Nothing else will cover it.

There is some good content in the "Clinical Management of Restless Legs Syndrome" book by Hening, Buchfuhrer and Lee. I carry a copy with me to all appointments and have given a copy to a doctor here and there.

[badnights]

It might not be such an issue with the patch - the jury is still out - but I agree with Ann, the doctor does not understand augmentation. You should not have been put on another DA until the withdrawal period was over, because the risk of using too high a dose of the new DA - to control the temporary withdrawal symptoms - is another experience of augmentation, this time on the new drug.

It might be harder to notice augmentation on the patch but I don't think it's any better for your body...

[jakesmom]

I don't know if my doctor has ever heard of a drug holiday. I know I hadn't until recently. I saw a topic here about it, but I have 2 questions.
1. Do you go off all your meds to clear your system?
2. How do you work, drive etc while you are doing it?

I was able to get 4 straight hours of sleep. Never thought I would say that like it was a good think.

Thank you all for your responses and insights.

[ViewsAskew]

There are two different ways to look at a drug holiday.
1) Stop all drugs for X amount of time.

2) Stop some drugs for X amount of time, while replacing them with others.

Each is done for different reasons. In the case of augmentation, you need a holiday from the dopamine agonist, not necessary ALL drugs. So, you can use a different class of drugs, such as opioids, to deal with the augmentation. Once it's over, you determine, with your doc, what the next course of action is. You can switch to another dopamine agonist, stay with an opioid, or try a completely different class.

Drugs you take a holiday from include opioids, benzodiazepines, dopamine agonists, etc. You stop a benzo or an opioid every 3-4 weeks, for example, to prevent physical dependence.

Another way to do a holiday is to just stop something for a weekend, then start it again during the week. I used to alternate drugs ever other day, in effect, taking a holiday. It prevented the worst side effects from both drugs.

Sometimes you aren't sure what's happening, so you stop everything. You don't usually sleep, work, drive when you do it!

That make sense?

[jakesmom]

Thank you,

Are doctors generally receptive to patients bringing them literature? I certainly don't have the answers and it is so hard to explain the need for stronger or different medications without feeling like a drug seeking addict.

[ViewsAskew]

Depends....

They do NOT like internet literature at all . If you print something from PubMed (which has research articles), that's different. But, there is so much misinformation on the internet, they are generally leary.

Publications from RLS Foundation, books by experts - in my opinion, a lot depends on how you approach it. Try taking only one or two at a time - handing a stack doesn't go over well. And, what you say matters. Stroke their ego, "I bet you've already seen this, but I certainly didn't know about it. I was interested because it talks about something that is so similar to my situation. Have you had time to read it yet?" If they haven't ask them to. Either way, close by saying, "Thank you so much for being willing to review it and get back to me about it. I really want your opinion about it and if it could help me." Or something like that.

But, even with all that? Some doctors will not like it. Their egos take a bruising. I find that my family doc is much more willing - she has so many things to keep up on, so she can't keep up on it all. The specialty docs are much less likely to listen. Many do think they know it all. Having a young doctor, some people here have said can really help - they know they don't have experience with all kinds of patients, so they seem to be more willing to learn.

[Polar Bear]

My GP was willing to look at information from the RLS Foundation highlighted where relevant. Also Mayo Clinic Articles. However I only used it to get what I wanted and never produced 'print outs' unless to really make something clear and relevant.
My RLS/WED expert (who wasn't an expert... he was a neurologist who thought he was an expert) was a waste of time and the cost of a private appointment.
Good information and a willing GP are a blessing.

[jakesmom]

I ordered the book that was mentioned earlier. I am going to read it and compile a few studies about drug holidays so I can make a logical, intelligent argument. After reading all the information I found on this site, I really think I need to get the high levels of DA's out of my system and start over. I really like my neurologist, she is young and understands about opiates eventually being needed for severe RlS, so I am hopeful she will be open to the idea of a holiday.

[pamndorr]

Hi Jakesmom...I hope things are beginning to settle down for you by now. I haven't been on here in a few days...haven't been feeling the best lately. Not sure if it is the patch or a stomach virus. Seems like it is always something.

I have been playing around with mine and trying to figure out the best time of day to change it. I am on the 4mg patch. So far I am still having that funky feeling break through in the evenings. I started putting a new one on first thing in the mornings and that for me was too early to change it. I changed the time to later in the day until I got to around 3pm...not a good time then either. I am now putting the new one on around 11am and I still can't sit still at night for very long and I gave up on sleep a long time ago. These drugs keep me up. I have been taking Vicoden around 7pm and depending on how bad it gets I either take another Vicoden or an Oxycodone at bedtime.

I also have found that the 4mg patch does not stick very well at all if you have any extra skin on your body. It needs to be on a tight place. I quit trying to follow the litte map they give you to track where you place it. I am using my upper arms and rotating arms and places on my arms each day. I also have been using rubbing alcohol to clean the area on my skin that i am going to apply the patch and I make sure it warms up on my arm before I take my hand away. I had used surgical tape to tape it on but that started leaving marks all over me and it tore my skin the other day when I pulled it off. They just don't stick very well at all.

I HATED the Mirapex and the Pramipexole...they make me a feel like a crazy woman on top of everything else. Unfortunatly I seem to only respond to the Requip, Mirapex and now maybe the Neupro. Out of all of them I feel more like a normal person with the Requip but I am not able to make the jump to Requip without the dreaded drug holiday inbetween...and the drs I have now do not believe in drug holidays...they would rather keep retrying all the drugs that I have already tried. I am coming to the realization that I will most likely always have to take the pain drugs to get through the evenings. I feel the rls all day but it is much worse in the evenings.

As for the drug holidays...I have had two of them. The first one the dr. had no idea what he was saying and doing to me. He was as frustrated as I was and he knew just enough about rls to know that I needed the drug holiday...after he told me to take Claritin for my allergies....worse thing I could have ever done. That was in 2008. He kept having me try all kinds of pain drugs to control the feeling....I was taking so many drugs and mixing them to make it through that I am surprised I didn't overdose. Finally after about 8 weeks we started trying me on all the different classes of drugs to see what would help me. I was working full time then and I was not an easy thing to do...no sleep and lots of drugs causes mistakes....not a good thing when you work with animals and need to stay on top of things coming in the door. Drs messed around with drugs until I was at 14mgs of Requip and augmenting and rebounding at the same time. ...that was the beginning of 2010.

My primary sent me to a new sleep dr and he was awesome. He got it and he understood. He helped me through my 2nd drug holiday in June of that year. The only thing I could take to control the pain was Methadone....it scared me to death to think about taking that...but he was great. He would call me a couple times a week to see if I was ok. I spent 8 weeks on the floor...I vomited all day everyday....I didn't eat much at all and had to be forced to drink. My husband took videos of me during that time....not a pretty sight. But I made it through it. Then my dr. got cancer and had to retire and now I have doctors that dont understand or just dont get it...
The difference between my two drug holidays was the first one I wanted to die...and the second one I just felt like I might die. The methadone may have been hard for me to tolerate but it did the job. These are just my personal experiences do not let them in anyway influence you in what course of treatment you choose to do...as everybody says we all tolerate all these drugs differently.

I have decided that I belong to a very special group of people that not a lot of other people understand. I feel better knowing that there are others out there that can understand me....I don't feel so alone now...and neither are you!!!