Side Effects and Insurance Woes of Ampyra
(This is Part II of a post about That New MS Drug. Check out Part I here: The ABCs and Other Things That Flood Your Inbox).
When Ampyra was approved in January 2010, I was ready for another go round. And get this... it can be taken with orange juice after my raisin bran! (Did you get that?!) Now granted, Ampyra is not a disease-modifying drug; it is a symptom treatment med. But I don't care! It's a pill for MS and the outcome could be beyond my wildest dreams.
Ampyra is advertised as a medication that will help people with MS walk faster. That's odd. How can a med improve one symptom of MS? Does it zero in on one patch of neurons and say, "Ok walking lesions, there is a new sheriff in town." It just doesn't make sense. (But what-ever! I want to walk faster!)
With a little more research I learned that this was the only symptom they were able to prove in the study. So does that mean that there may be other symptoms that it helps with? And I get out from under that farmhouse, with my arms spread wide in full Technicolor and start to sing. And just as my excitement level has gone through the roof... the wicked insurance company appears in a puff of smoke on their enthusiasm-sucking-broomstick.
My insurance company turned down the Ampyra script. Apparently the study only quantified that if you walk "this" speed, it can be increased to "this" speed. So, if you walk faster than the "that" speed, you won't have a chance to see if Ampyra will improve it, or any other symptom that might only be seen at home as opposed to a lab.
When I went to my next exam I swear I was walking slower so that "that speed" would qualify for "this drug." When my doctor submitted an appeal I wasn't really paying attention anymore. The approval caught me completely off-guard! (Those insurance companies really make us dance up and down that yellow-brick-road, don't they?!)
So the white oval pill arrived to fill the tiny space left in my organizer. Is it making a difference? I'm not sure. I think so. It seems that I can stand longer than I once could; most of the time. But sometimes I can't stand for short lengths of time and I wonder what this Rx is doing besides filling that tiny space in my pill organizer.
So I'll revert back to my default sense of hope that carries me through these ups and downs and push aside the enthusiasm of how my life with MS might dramatically change for the better. At least until the next big thing comes down the tracks; Until then, I've got my Dramamine in hand and I'm ready to roll.*
*Since the time I had finished this post, I've elected to participate in another drug study. BG00012 is the name of my next amusement ride. I'm hoping that it will lead to a queue of enthusiastic hope that stretches around the park. Wish us luck! You never know, this one might bring hope to more than just me!