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duodopa, duopa pump

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Old 11-08-2017, 10:24 PM   #1
jolot
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Default duodopa, duopa pump

79 yo, diagnosed 2001.

Has anyone had experience with duodopa or duopa pump. What are the pros and cons? I am currently taking prolopa 150mg (s/a madopar) (s/a sinemet) with comtan eight times a day at 90 minutes spacing. I also take gabapentin 600mg x3/d, clonazepam 1mg x3/d, mirtazapine 35mg x1/d.

I consistently 'wear-off' at around 10.30am till 2pm. I discontinue my prolopa at 4.30pm as I am unable to sleep with the prolopa in my system, and when it wears off I will be awake most of the night with dyskinesia. I experience dyskinesia in my right foot off and on during the day but it is severe starting at about 7pm and can last for two to three hours making me feel really worn out and weak when I go to bed.

My neurologist has offered to provide the duodopa pump. I would like to hear from patients who have experienced the pump and how it affected their symptoms.

I am worried about cognitive decline with the additional amount of l-dopa constantly in my brain. Is this something that I should be concerned about?

I live alone and am concerned about the pump maintenance and also the loading of the gel.

Any information is appreciated.
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Old 11-21-2017, 07:30 PM   #2
canuk2112
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I’ve been on the Duodopa system for 14 months with much success. If you respond well to levocarb, Duodopa can possibly be titrated to a level that will greatly improve your on time. The pros and cons are too complicated to explain in a few paragraphs, but I believe the pros out weigh the cons. Pm me if you want more info.

Quote:
Originally Posted by jolot View Post
79 yo, diagnosed 2001.

Has anyone had experience with duodopa or duopa pump. What are the pros and cons? I am currently taking prolopa 150mg (s/a madopar) (s/a sinemet) with comtan eight times a day at 90 minutes spacing. I also take gabapentin 600mg x3/d, clonazepam 1mg x3/d, mirtazapine 35mg x1/d.

I consistently 'wear-off' at around 10.30am till 2pm. I discontinue my prolopa at 4.30pm as I am unable to sleep with the prolopa in my system, and when it wears off I will be awake most of the night with dyskinesia. I experience dyskinesia in my right foot off and on during the day but it is severe starting at about 7pm and can last for two to three hours making me feel really worn out and weak when I go to bed.

My neurologist has offered to provide the duodopa pump. I would like to hear from patients who have experienced the pump and how it affected their symptoms.

I am worried about cognitive decline with the additional amount of l-dopa constantly in my brain. Is this something that I should be concerned about?

I live alone and am concerned about the pump maintenance and also the loading of the gel.

Any information is appreciated.
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Old 11-22-2017, 01:06 PM   #3
ashleyk
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Default Rytary

Before you try the pump maybe you should look into Rytary. I assume it's in Canada maybe a different name. My wife takes it because the Stelevo she was taking contained comptan and made her hallucinations/delusions worse.
Rytary is Sinemet but in timed release form and usually given every three hours. My wife took all the other PD stuff but no longer does, don't know if they did much good anyway. Sinemet is the only pill that works.
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Old 11-24-2017, 07:19 PM   #4
Blackfeather
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For those who may be considering the
duodopa pump, there may be a better option before long. My neurologist informed me of a pump -patch combination that is applied to the skin and doesn't involve surgery, reducing infection risk. It is being developed by Neuroderm, an Israeli pharmaceutical company. The pump delivers levidopa steadily over 24 hour period. Supposed to be available in one to two years, or so I'm told.
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Old 11-30-2017, 08:10 AM   #5
canuk2112
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I'm hoping for this product to come on line North America -soon. While Duodopa is a real game changer, the opportunity to achieve similar results without an intestinal tube would be wonderful.

Quote:
Originally Posted by Blackfeather View Post
For those who may be considering the
duodopa pump, there may be a better option before long. My neurologist informed me of a pump -patch combination that is applied to the skin and doesn't involve surgery, reducing infection risk. It is being developed by Neuroderm, an Israeli pharmaceutical company. The pump delivers levidopa steadily over 24 hour period. Supposed to be available in one to two years, or so I'm told.
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Old 11-30-2017, 09:14 AM   #6
Blackfeather
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Quote:
Originally Posted by canuk2112 View Post
I'm hoping for this product to come on line North America -soon. While Duodopa is a real game changer, the opportunity to achieve similar results without an intestinal tube would be wonderful.
I just found out 2 days ago that my neurologist clinic will probably be one of a hand full of sites in the U.S. for phase 3 testing of the Neuroderm pump system. I was informed that I would be on the short list to get the pump. I'm very excited about this prospect and praying that it happens. The Neuroderm pump/patch system truly will be a game changer. In any event, the FDA is fast tracking the approval process, so hang in there.
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Old 12-01-2017, 09:49 PM   #7
jolot
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Default Duodopa pump

I appreciate all the information provided. I am unable to wait two more years for the Neueoderm pump. So will go ahead with Duodopa.
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Old 12-02-2017, 07:59 AM   #8
canuk2112
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Let me know if you wish to talk about duodopa, can chat online.

Quote:
Originally Posted by jolot View Post
I appreciate all the information provided. I am unable to wait two more years for the Neueoderm pump. So will go ahead with Duodopa.
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Old 12-05-2017, 06:38 PM   #9
jolot
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Angry Thank you for your input

Quote:
Originally Posted by ashleyk View Post
Before you try the pump maybe you should look into Rytary. I assume it's in Canada maybe a different name. My wife takes it because the Stelevo she was taking contained comptan and made her hallucinations/delusions worse.
Rytary is Sinemet but in timed release form and usually given every three hours. My wife took all the other PD stuff but no longer does, don't know if they did much good anyway. Sinemet is the only pill that works.
Rytary is still not available in Canada.
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Old 12-05-2017, 06:46 PM   #10
jolot
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Default duodopa, duopa, pump

Quote:
Originally Posted by Blackfeather View Post
For those who may be considering the
duodopa pump, there may be a better option before long. My neurologist informed me of a pump -patch combination that is applied to the skin and doesn't involve surgery, reducing infection risk. It is being developed by Neuroderm, an Israeli pharmaceutical company. The pump delivers levidopa steadily over 24 hour period. Supposed to be available in one to two years, or so I'm told.
Thank you for this information, I am not in a position to wait several years for this development. Here in Canada we still do not have Rytary available.
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