ABBVIE 951
I’ve been involved in this clinical trial for the last three years (since the beginning).
What is it?
Aggvie-951 is the injection of the drug that turns into dopamine (when it crosses the blood-brain barrier). The injection is sub-cutaneous—that is, just below the skin—and somehow these little dopamine-wannabes end up in the blood stream and into the brain. So the pump is about the size of a small cell phone, back before phones were super small. Think “flip phone opened up.” I hang it from my neck with a string/rope that keeps the pump dangling down so the bottom of the pump is adjecent to my belly button. The tubing from the pump to the injection point (the cannula) is maybe 14-18 inches long, and it lives under your shirt while you’re wearing the pump. (You are wearing the pump 24×7 except when you take it off to shower or when you make a “personal decision” that it should be off for a while. (Don’t keep it off more than an hour though or you’ll have to start all over for the day.
The great part about it is … no more levodopa pills! The problem with the pills is that food can block it. Proteins can block it too. When I’d wake up in the morning (OFF because I haven’t taken any levodopa for 8 or 9 hours) it would take an hour or two waiting for the pills to kick in.
With the subcutaneous delivery, I’m …. almost always on. It’s wonderful waking up and already being on!
Now, when you are ON, it doesn’t mean that you’re reversing anything. ON is when you’re doing the best you can do considering where you are with PD.
There are a couple of downsides to the pump. Whereas the drugs from the pills “build up” in the system a little bit, the drugs from the pump don’t. That is, if the pump is off (you need to take it off for reasons such as taking a shower)you are not getting dopamine into the brain. At least, that’s the feeling I’ve experienced.
You need to change the “cannula” every three days: that is, you need to move the port where the injection occurs every three days). That’s kind of a problem because we could only use our abdominal area, and I quickly developed a lot of scar tissue there. I was in really good shape going in to the clinical trial, but after a year of the cannulas on the belly, my stomach looked like a minefield after a major war.
The pump and cannula can not be submerged in water. I haven’t gone swimming in three years, and I miss it. You have to be very meticulous about being “laboratory clean.” I’ve gotten site infections three or four times and they can be nasty and quite painful. I haven’t had an infection in over a year, so I must be doing something right.
Now, recently, we’ve been allowed to put the cannulas in other places, such as the backs of the arms, and the “back fat” (known as “love handles”) and that works well. The only issue there is that you won’t be able to administer the connection of the pump to the cannula because you won’t be able to reach it.
Here’s a good article on the pump.