I just finished my second week of the new Friedreich's ataxia drug. The cost issue changed pretty drastically, from $6,000 a month to $80 to zero. I have no idea why.
I still can’t walk—that would have been cool but the medicine’s not supposed to do that.
But honestly I notice no change—good or bad.
The bad was what I was most worried about. I had read some horror stories in a Friedreich's ataxia group I’m in.
My neurologist must have heard them, too, and seemed a little frustrated when I e-mailed to tell him I was having second thoughts. His reply was interspersed with all caps.
I started it soon after.
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