I have used the Duopa system for the past 5 years. While my symptom improvement was clear, with time the entire system, even at its FDA approval was antiquated and (in my opinion) it has been a disappointment with its clumsy ergonomics.
From the users (patient's) perspective, the present system is primitive, bulky, and becomes ever more cumbersome and difficult to use with time and disease progression, I wonder why there have not been any incremental changes? Is ABBVIE planning to replace the antiquated, bulky, heavy pump that is presently used? It certainly is so heavy (for me) that it makes balance and swift movements more difficult than necessary. Also, its bulk makes normal clothing not wearable unless a tent is your normal dress. I find that its weight is a danger to maintain balance in normal activities and a deterrent to valuable exercise because of the tendency to pendulum about one's person. It seems hard to believe that a much smaller, equally strong pump could not be substituted for this piece of medical pump history.
I understand that the system was approved under an orphan drug regulation. Surely improvements should be attempted. Smaller pumps, easier to manage tube site placement, consideration of smart device tracking of use versus input versus side effects. Even (heavens to Betsy) an insulin like self- regulating system under the same limited use regulations.
Finally, does anyone know of the results of long term (> 5 years) side effects of chronic direct intestinal ingestion of L -Dopa, Carbi-Dopa, Carboxymethyl cellulose? I find these results difficult to find. There should be historic reports somewhere! Has anyone noted unusual side effects that would share the experiences?
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