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vipowitz

neupro patch oct 2012

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Thanks for alerting us to this development. Just weeks after DBS I'm experimenting with half a sinemet 25/100 up to ten times a day. (5 tablets) This is way down from my pre-op demand for up to 18 full tablets a day to move somewhat. So until my battery and meds are working in tandem optimally, I feel I need more control over dosing than a patch would allow. I've been meaning to write about the DBS 'experience' and will. regds vipowitz. Roger

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I used Sinemet for RLS and switched to the Neupro patch without incident. I've done that several times with the patch being recalled then getting into a study for the patch. I do not know if that is indicative of how it will work for you, but hope it goes as smoothly as my transition. I was using 1/2 25/100 several times daily, and 1 50/200 at night. My first day on the patch I used both doses of the Sinemet (because I didn't give it long enough to work before giving up!). Didn't seem to make a difference that I noticed. Still occasionally I fail to put the patch on in time, and have used the 25/100 sinemet many times with the patch. I maybe should have talked to somebody about using both, now that you mention it :-) Thankfully it worked fine. Don't know this helps any, but I wish you great success with the patch! (I think it's a miracle!!!)

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I have done the opposite. I have been titrating off the patch (from 6mg/24 hr down to 1 mg/24 hr), and will be off it totally in a week. I am now just starting the 25/100 Sinemet 3x a day. I liked the patch at first, but have had two neuros (and the Dr on this forum) tell me that I shouldn't be on two agonists at the same time (Neupro Patch and Mirapex). After my "honeymoon" period on the patch, I started realizing that it did have it's issues (at least with me - I know we're all different). For me, it was very hard to stay on aside from my underarm, and considering you are supposed to change it every 14 days, that didn't work.....BUT I have horrible oily skin at times, and sweat and swim. For me, it didn't work, and it took a few months to figure out....not so much due to medicinal issues as lifestyle issues....hence my start on Sinemet. It would also irritate my skin, even if I put it somewhere else.

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I think the 14 day reference was that you're not supposed to use the same spot for the patch for 14 days. You're right - it should be changed daily.

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Sorry, yes, I should've worded that differently. It should be changed every 24 hr. I had issues with the placement/spot, and it would only stick under my arms for some reason, so even though you're sup to change the spot every two weeks, I couldn't. I liked it at first, but for me it became a hassle.

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Hey Kristakj78 - YIKES!! Was that another typo I hope?? It's not that you're supposed to change the spot every two weeks - you are NOT supposed to use the same spot for two weeks. I hope you didn't try to put a new patch on the same spot every day for 2 weeks. OMG if you did I hope your arm didn't fall off!!!!!!!!!

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That was part of why I had to stop it- I couldn't change it to a different spot daily :( it just wouldn't stick to ANYWHERE else my neuro suggested, aside from my underarm :( so I was forced to either change it constantly (cause it kept falling off), or keep placing it on the same spot every day (which strangely enough, I didn't get a rash, but I know you're not sup to do). The weird thing was that I did get a rash in other spots I tried, but not on my underarms, which is where I would expect a rash since I was constantly placing it there around the same spots. I don't know, I was excited at first about it, but after a few months of "dealing" with it, it just didn't work for me, but we're all different.

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So, for those that are using the patch. How is it working?

Has it lessened the wearoff time and I'm curious about having any dyskinesia with it. Do you ever need to supplement with the sinemet pills?

My Neuro was wondering what feedback I was hearing from those using it on this forum, since I will be his first patient to use the patch. ( other than the very first one they came out with).

 

Thanks,

Karen

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Hi.

Drummer Girl, I have been trying to use the neupro patch on a for a few weeks here and their. I was usuing the 4mg they worked some of the time. Which did include a day where I woke up and was able to jog. I am typically very stiff. But with me I was getting flu like symptoms from the patch, including vomiting. So I went down to the 2mg however I did not see the same benifits.

i just put a 4mg hope it works have some walking to do for a hockey game tommorrow. Hope this helps

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I've been using the 6 mg. patch for about 6 months now along with 1 mg. azilect daily. I had one or two very brief periods of nausea and dizziness when I first started but no problems since. I find that this combination along with the daily pt exercises has helped significantly with the rigidity and even some decrease in tremor at times.

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Just finishing third week on Neupro, titrating weekly from 2mg to 6mg now. Still on Sinemet. 2mg patches did not stick well.

 

Notice a slight benefit the past couple of days in gait. Daytime sleepiness still happening, but getting better. Weird dreams continue. Really hoping it kicks in.

Edited by Oakman
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Aloha Oakman,

 

One trick I learned to help the patch stick and activate it is to cover it with light pressure from your hand for the first 30 seconds. When I do this I rarely have one come loose. It is my understanding that the heat from your hand helps to activate the patch.

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I've had reasonably good results with patch over the past four months. I'm 43 and was dx in 09 at 39. At the time I started the patch I'd been on a dose of Stalevo 125 3 x daily for over a year. I was reluctant to start up on an agonist again after becoming very sleepy during the day on Requip and Mirapex and having difficulty with sleeping at night. my tremor and foot drag and dystonia had been getting worse so I went for a med check. My doc was very concerned about me developing dyskinesias so I agreed to try Neupro rather than increase my Stalevo (comtan/levodopa) dosage. No side effects at the 2mg dose, although no symptom relief either. After I worked up to a 4mg dose I started to notice some improvement. It didn't help my tremor, but I did notice it alleviated the dystonia foot curl and foot dragging I was experiencing in my right foot. No side effects from the patch other than it causing me to wake up more in the night. I tried peeling it off before bed and this helped with that side effect. I was still having trouble with worsening tremor so I increased the patch up to 6 mg a few weeks ago. This has helped but still having problems in the morning getting my meds to kick in. I think it's because I'm still peeling the patch off at night and my body is wanting to have regular levels of dopamine. I just started experimenting with wearing a 2mg patch at night and hopefully this will keep my levels stable. One bad thing about the patch is that the withdrawal symptoms aren't very fun. I ran out of 4 mg patchs for about 3 days because of a problem at the mail in pharmacy and I ended up with really bad diarrhea an naseua. I usually stick the patch on my torso, although best place for sticking and not itching is along my backside or hips underneath my underwear.

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Aloha ajs99,

 

For what it's worth, my MDS told me not to put the patch below my waist as it will be less effective. I rotate mine on the top part of my chest and my upper arms.

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Thank you all for sharing your experiences. It is so interesting or sometimes frustrating how different the Neuo docs can be.....

 

I am curoius about the patch at night. Do you wear one at night? I would think no.? Does the patch kick in quicker than Sinemet?

Probably depends on what you have left in your stomach from the night before.?

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I wear a patch for 24 hours and therefore never feel it "kick in". The concept behind the patch is to distribute the med dose evenly throughout a 24 hour period.

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ditto to what Oakman said. I wear mine for 24 hours a day. I recently went went sailing and snorkeling and the patch never came off or even loose. I had it on my upper arm where I find they stick the best for me. I've not been on any other pd meds except for the Azilect. I have noticed an increase in rigidity recently. I see the mds in March will ask her if I can increase to the 8 mg. patch or try something else. I really like the patch concept so would like to continue with that if possible.

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Aloha ajs99,

 

For what it's worth, my MDS told me not to put the patch below my waist as it will be less effective. I rotate mine on the top part of my chest and my upper arms.

 

I didn't know that the patch was more effective above the waist. I'll keep that in mind. I try to rotate the spots but don't usually put them on my upper arms. I'll have to see if that works as far as comfort and staying in place. I've been having better luck with sleeping through the night while keeping the patch on the past few nights. I'd have to say I'm happy with the improvement in symptom and if It doesn't mess with my sleep I'd be very happy!

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As far as I can tell I haven't had an increased urge to eat but I believe I read that compulsive behavior is a possible side effect. I believe this is true of all dopamine agonists but can't say 100%.

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