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Topic Neuropro Patch ... comments? experiences? Go to previous topic Go to next topic Go to higher level

By makrivah On 2013.08.26 22:26
Hello, all. We saw my PWP's neurologist and physiatrist today. (At the Veterans Administration in Richmond, VA.) My husband is holding his own. Looks like he is a good candidate for the Neruopro Patch. Their intent is to wean him off the sinement, comtan and ropinerole. The process would take approximately 3 months. Starting with 2mg/day of neruopro and slowly dropping ropinerole. Then up the Neuropro again and gradually decrease comtan. Then finally, level out (4-6mg) neuropro and eliminate over time the sinement. Of course the timing and dosage would be tweaked as needed every two weeks during doctor follow-up visits. I would be watching for reactions and effectiveness per their instructions and keeping a detailed log.

My husband is excited that the once a day patch would eventually eliminate 12 pills a day (4 each of sinement, comtan and ropinerole). I read the list of possible side effects and take pause. I understand that pharmaceutical companies must CYA themselves and include every possible interaction/side effect in their literature. That's why I'm asking you folks for your comments, opinions and experiences. You REALLY know the risks.

p.s. It's been a bit over 6 weeks since I broke my leg. So also today I had my ortho appointment to see how I'm doing. They removed the non-weight bearing cast and put me in a "camo boot" where I can put weight on my foot. First thing I did when we got home was take a log soak in a warm tub with a glass (plastic) of wine. I had no idea how much tension can build over a full day of doctors and changes and 4 hours of driving with a bum leg. (Oh my, that sounds like I'm looking for sympathy; I'm not, just going on a bit... sorry about that!) BTW, He has been sleeping peacefully in his recliner since we got home. Over the last six weeks, we made quite a pair getting around town!

By Sheridan On 2013.08.27 06:27
Hello Makrivah,
Please see the discussion started on 6/8/13 about the Neupro patch. My husband is using 1mg patch for 6 hours daily with periodic days off. The patch has REALLY helped him but as he is prone to side effects ( and was so on Mirapex also) we have to monitor closely. Hope you have great results!!!! Keep us posted...

By makrivah On 2013.08.27 14:24
Sheridan, thanks for pointing out the earlier thread. I read it thoroughly and feel forewarned. I am nervous, but am willing to give the neuro patch a try.

By parkinit On 2013.08.28 16:45
mak -
Neupro, Requip, Mirapex are all in the same family of drugs and are potentially all may cause addictive behaviors. Pornography, gambling, shopping - to name a few.

Beware. Even at low dosages this may occur. You have to weigh the good against the bad and sometimes they appear to be quite equal.

By Tbauer On 2013.09.05 22:08
Our neurologist suggested the Neupro patch last November. Expensive and in addition to his simenet. My husband was having so much leg and pain issues at bed time, she felt that we should try this. It did ease his discomfort quite a bit, but the cost is huge. We are almost into it for a year and we can actually get good sleep again. I do notice that he is most unstable on his feet during the day, so am wondering if we should use it only at night. He is falling daily and his confusion is worse. We are now at 11 years since his diagnosis.

By dans316 On 2013.09.11 15:22
My wife started Neupro yesterday morning. It was not a good experience. She was unable to sit up straight in a chair and was leaning back with her head bent back so she was looking at the ceiling. She developed pain in her neck which was alleviated by lying down in bed on her back. We did not put a patch on this am and she is now back to sitting nice and straight and alert. Yesterday she seemed almost to be in a trance and very slow to respond to questions or no response at all. She was to start with a 1 mg dose for 7 days, then try 2mg, but her Neuro said to discontinue the Neupro.

By makrivah On 2013.09.11 16:41
Yikes! That's scary. I hope she has recovered.

By dans316 On 2013.09.14 11:38
My wife has been off the Neupro since Wed. and has completely recovered from it's effects. She had been on Sinement for 7 years and was suffering increasing dystonia. At least with the Sinement she would get some relief when the pill would wear off, but with the patch, it was continuous. Now she is going to try Amantadine.

Dan

By Mary556 On 2013.09.14 14:22
Prayers for your dear wife, Dan.

By dans316 On 2013.09.18 10:25
Thank's Mary,

She seems to be doing ok on the low dose of Amantadine so far although she still experiences Dystonia. But that happens about 3 pm the next day, she takes the Amantadine around 9:30 pm, so this seems to happen as the Amantadine wears off. Before when she was taking Sinement, within 30 minutes of taking it she was experiencing Dystonia and as the Sinement wore off, so would the Dystonia. The best remedy for the Dystonia for her has been to lie down in bed and within about an hour she is ok.

Nothing about this disease makes any sense.


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