Duodopa
 

Also from Par:

Following link to YouTube starts part of a 3 piece information film made by Pd association and Solvay Pharma. It is in swedish but at the end you can see difference when I stop the pump for one hour.

http://www.youtube.com/watch?v=Dx1v9...=youtube_gdata

Wow! Lindy Lanka which part of the series are you in?

The third part at the beginning really show the contrast.

http://www.youtube.com/watch?v=_oHen...eature=related

Any word on this in the US?

it's in clinical trials right now. i think its a combination phase 1 and 2 with about 3 or 4 open participants and the rest blinded with placebo. i can't imagine not being able to figure out very quickly whether you have the placebo or not, the FDA requirements have delayed this treatment for years.

open trial- no blinding - patients know they have the drug. they usually do very well what is wrong with that? that should just be a blessing why try to eliminate whatever is helping

blinded - placebos given but they can't take away sinemet as this is for more advanced patients. so they have to take meds, with the placebo group being given saline in the pump and real meds; and the rest getting duodopa and placebo meds.

a very elaborate deception plan indeed and sham surgery too!
and after ten years of european data where its been approved for that long.

Hi, I am not in any of this, I was given this story by the person in the video, who is eager to assist in anything that might benefit other people with PD.
I posted his story also on another thread.

Lindy

There is no excuse...
 

I am so furious and fed up with the FDA when it comes to approving PD treatments! WTH?

Duodopa has been used successfully in Europe for at least 5 years, not to mention the whole concept of direct delivery into the small intestine has been around at least 20 years- yes folks, this concept was first explored; what is so different about using it here? Are they telling us Europeans and Americans have such vastly different anatomy that years of testing is required here? I find it unconscionable that this is not at the very least fast tracked. This makes me highly suspect that Medtronic doesn't have something to do with its delay? If we have Duodopa as an interim or alternate to DBS, how much business will Medtronic lose? If this has to do with nationalism in the sense that our tests are required as we set the bar higher...I'm not at all convinced.

Laura

agree agree
 

Laura - I agree whole-heartedly. When a treatment like duodopa is approved for use in Europe - there should be a mechanism to fast-track its approval in the US. Our bloated bureaucracy is holding back a treatment that works well for pwp - duodopa. Shame on them.

follow the $$$
 

Yep, don't want anyone to lose any money here...also I think there is a huge disinclinication to approve something that may cost more than a few $$$ (like drugs) when so many need it-if this were approved, or rather, WHEN it is finally approved, think how many people will be lining up to get it...and how much that will cost social security (most PDers are on medicare, medicaid), etc.

I recently attended a doctor's appt. for my mom, who thankfully does not have PD....we were discussing a treatment for incontinence and the doc told us flat-out that it wasn't, but should be, approved for fecal incontinence since there were "thousands of studies" showing it worked just as well for that as it did for urinary incontinence....the holdup? Money, he said they don't want to approve it for fecal incontinence because it'll increase costs to "the system", all the seniors will be lining up for the procedure (apparently a very small credit-card sized implant in the spine that eliminates (ha!) the problem). Oddly, in lieu of this unavailable (or rather, we can have it, but pay for it ourselves (no can doo, sorry, couldn't resist that one either!) treatment, he recommended biofeedback with physical therapy for the problem. Don't know how many people here have this problem as part of the PD, but thought I'd mention it. And yes, I was shocked to hear this traditional doctor recommend biofeedback coupled with physical therapy for this.

Is this like?
 

Is it used for those of us unable to swallow or for rescuing from increasingly unpredictable offs?
Is it a bit like apomorphine?
Thanks,
Lee

What is it....
 

Duodopa is a continuous delivery system for levodopa that delivers the drug directly to the right part of the digestive system that absorbs it. It bypasses the stomach completely, and is in someways similar to the pump delivery systems used for diabetes or MS, but does entail an operation and an implant. (Please correct me if I have got this bit wrong)