My husband has participated in the Duodopa trials for almost 3 years. While he has much more "on" time, it is not without it's complications.

In the past 2.5 years, he has had the PEG/J tube replaced surgically 8 times. The tube inadvertently migrates from the small intestine back up into the stomach, or gets clogged, or both very frequently. For example, in 2014 alone, he had had three Interventional Radiology procedures to clear and reposition the tubing. Since I don't see the bills, I can't be certain, but I am guessing they run about $5K/session. Surgeries to replace the pump are probably 4x that.

He does continue to hallucinate, and has had more than one episode of total psychosis. The doc here says that is due more to the progression of the disease than too much L/C or Duodopa. It does not cure his imbalance problems, nor his visio-spacial problems. It is not a cure-all, and you do not use it 24/7, but rather 16 hours per day. At night, you take Sinemet.

The real question is whether Medicare will pay for it. Speculation says the drug alone will cost $60k/year, and expect that much more in medical expenses for these various procedures.

Then, doctors will need to be trained in dosing and the surgical technique for the PEG/J insertion. The cartridges for the Duodopa need to be refrigerated. I could go on and on.

As the caregiver, I will tell you that I am sick to death of it.

Parkiwife,

I cannot thank you enough for sharing your firsthand experience with this. It is very hard to find anything other than glowing articles about duodopa. A neuro we saw expressed grave concerns about it.

I am so sorry you have had so many problems with this, and sorry for our PD community, because so many of us had very high hopes for this (realizing there would be issues with cost, of course). It is good to know the other side of the story, from someone who has direct knowledge and experience over
a long period of time.

I would invite you to share your experience with other PD caregivers, in a PD forum specifically for PD caregiver's, which you can find at www.myparkinsons.org.

Thanks again for sharing.

timely given this discussion...

http://www.biospace.com/News/abbvie-...ource=MoreNews

Debi