Sorting it all Out Michael Kaplan's random stuff of dubious value Be sure to read the disclaimer here first!
This is one of those posts about my medical situation. Skippable if you aren't into that sort of thing!
I've talked about Ampyra a few times before on this Blog, e.g. in blogs like these:
As that last blog indicated, I was on the fence about stopping the Ampyra.
It does help with some of the symptoms that contribute to my inability to walk without falling. Which is very cool.
But it does not help with all of them, and I really am still stuck in a wheelchair, albeit a cool one.
Now Ampyra, unlike the drugs that I am even now haunted by the fact that I wasn't taking over the last 15-20 years ago (described here) is a 100% symptomatic medication. Being on it has no long-term benefit for me.
Given the fact that this > $1000 per month drug alone will put me over the $11000 health care ceiling before which the post-health care change Microsoft will go back to 100% coverage (previously explained in The exciting nature of being ordinary and The ordinary nature of being exciting), I don't think the minor benefit to me that this drug would have is worth the $2000 annual salary decrease that it would guarantee.
Use of this drug could then be considered an official casualty of the Microsoft Health Care changes. By putting financial incentives in, I have decided it is more "responsible" to just not take it. And by "responsible" I mean "cheap". So Microsoft benefits from my responsibilitycheapness. Congrtulations.
So I am going to stop the Ampyra soon.
I could wait until the changes took full effect -- and perhaps I may wait a little bit. But I'd hate to find that the drug helped me some other unknown way and I had to decide whether the new exciting drug feature was worth $2000 of my own money. Better to go with the unambiguous situation.
I went to a couple of recent presentations that the pharmaceutical company (Accorda Therapeutics) put on -- one in Lynnwood and one at the airport Marriott -- and had a chance to talk to doctors, physical therapists, people from Accodra, and several patients. And I am prepared to take my suppositions from They got the $2000 from me, which is probably all they were looking for.... and call them facts.
And not just because of the smarmy nature of the presentations, that glossed over facts and limitations in the existing studies. Nothing is smarmier than these kinds of presentations.
And it is not giving out a drug in monthly doses that they guarantee to work within 0-6 weeks -- meaning that the drug company gets to make a free half month of money off this huge "hot dogs come in 8's, hot dog buns come in 10's" situation. I mean that is smarmy too, but they blame packaging (despite the fact that it is packaged in a bottle that could fit twice the dosage, so it could obviously fit 1.5 times the dosage!).
It is more subtle than all those things.
They could have targeted the studies better and gotten better info on who benefited from the drug, but Accorda is in it to make the money while they can.
I mean, it is only a matter of time.
Prescribe a medication whose accidental overdose beyond one pill every 12 hours can cause seizures to people with a disease that is known to cause memory problems?
That's just asking for trouble.
Why spend more money to better target the drug when you can pocket the cash for as long as you can?
Anyway, the bit up in the title is true. One of the known uses of 4-AP (the main drug in Ampyra) is to induce seizures in birds, as a way to scare them off (the idea is that once a few birds are having seizures, the whole flock freaks out and they all leave). this kind of bird control measure is I'm sure something that many animal rights groups are pretty unhappy about. But it helps underscore how close to the surface this particular side effect is.
This fact was on one of Dr. Bowen's slides at the first presentation, added by him. The Accorda Therapeutics people were not amused, and said this would not be in the next presentation (it wasn't).
Until they can fix or improve my other related symptoms, I don't find it to be worth the costs.
So if Ampyra helps you then great (it was effective for me, though not good enough to help me in the long run). But be careful not to overdose. Unless you are a bird near the airport, in which case I suppose one should be doubling down....