[Jim091866]

This is possible with a new treatment called Duopa. Am I missing something because I am over the top about this new therapy. Maybe you all know something that I don't...

[soccertese]

Originally Posted by Jim091866

This is possible with a new treatment called Duopa. Am I missing something because I am over the top about this new therapy. Maybe you all know something that I don't...

https://www.youtube.com/watch?v=T-D-KPfoCJw

interesting video on duodopa skip ahead to 1hr, 7min.
definately most people gain more on time but you still take pills.

[kiwi33]

I hope that Duopa helps you.

You might find the information about it here helpful; http://www.drugs.com/cons/duopa.html .

[Jomar]

According to the video , a short synopsis... as I understood it .
you are connected to the pump with meds flowing into a specific area of intestine for 16 hrs per day , then will still need some pills while off the pump..

[Jim091866]

Originally Posted by Jo*mar

According to the video , a short synopsis... as I understood it .
you are connected to the pump with meds flowing into a specific area of intestine for 16 hrs per day , then will still need some pills while off the pump..

Ummm, let me see... No pills during the day. I am ON all the time, if this is properly adjusted not a whole lot of dyskinesia-ARE YOU HEARING ME? Are you interested? You are not taking an agonist with all of it's side effects. This is Carbidopa/levodopa!!!!

Sorry to sound so brassy but I have been following this thing since before it got into trials over here in the U.S.
They have had it in Europe for about 15 yrs.

[pegleg]

Have you checked into the cost? It seems we discussed this therapy at length here since it has beeen approved and used in Europe for several years.

In Europe they call it Duodopa; in the U.S. it is called Duopa. Some in Europe swear by it, saying it changed their life. However, they have free healthcare. While our insurance might pay for the peg-tube surgery, the intestinal gel is considered "medicine" and may not be covered by programs like Medicare. I understand one tube of the gel (guessing that it lasts about one month) runs into thousands of dollars.

My problem is that dopamine (after 21 years of it) causes dyskinesia and dystonia, thus I opted to try DBS - I dont know of any other therapy that gets you off carbidopa/levadopa. Does anyone else?

Peggy

[Jim091866]

Originally Posted by pegleg

Have you checked into the cost? It seems we discussed this therapy at length here since it has beeen approved and used in Europe for several years.

In Europe they call it Duodopa; in the U.S. it is called Duopa. Some in Europe swear by it, saying it changed their life. However, they have free healthcare. While our insurance might pay for the peg-tube surgery, the intestinal gel is considered "medicine" and may not be covered by programs like Medicare. I understand one tube of the gel (guessing that it lasts about one month) runs into thousands of dollars.
My problem is that dopamine (after 21 years of it) causes dyskinesia and dystonia, thus I opted to try DBS - I dont know of any other therapy that gets you off carbidopa/levadopa. Does anyone else?

Peggy

exactly, you would be a good candidate

[GerryW]

A typical prescription may cost $1,111 or more for 5 cartridges (100ml) of Duopa 4.63mg/20mg/ml.

[pegleg]

Thanks, Gerry

I ha d no way to find this information.

Peggy

[pegleg]

Jim091866

How do you come up with the answer to my dyskinesia/dystonia to be the Duopa pump? Yes, for those with ups and downs and on/off problems, I do see it really helping there. But the gel is dopamine (carbidopa-levodopa). Ii have met a gentleman who is a doctor and uses the pump and swears by it, but how can it help me? I have to get down to minimal - very minimal or maybe even get off L-dopa entirely. And Duopa is another form of dopamine replacement, only a different method of its delivery. DBS uses the brain's electrical impulse system (similar to how our heart operates). By varying the placement of the probes, they get differing results.

I underwent extensive evaluation, plus the neurosurgeon downloaded and studied about 8-9 MRI's and a myelogram to get a history of my spinal stenosis problems. I trust these professionals and truly appreciate your concern, but Duopa does not appear to be what will work for me. When and if they change their minds, I will let you know. Thanks.

Oh, and I also reviewed the possible use of Apokyn (apopmorphine) - a mega-dose of injected agonist used when off. It caused way more dystonia and dyskinesia. You also must take a strong anti-nausea med with it. Each PWP is very different, and I am no exception.
Thanks.
Peggy