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Re: Modanfinil

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Ruth,

How expensive is modafinil?

I don't think I have type 1A, but could sure use something for the

debilitating fatigue.

I am curious if the research was done on different types of CMT

besides type 1A. Gretchen, do you know? All I have found is that it

was done on 1A.

Holly

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Holly,

The bad news is that modafinil (Provigil) is very expensive, and there is no

generic equivalent. Of course it depends on what insurance coverage you have.

Because I'm eligible for Medicare, my HMO (Kaiser) requires that I enroll in

their Senior Advantage program (which I call Senior DISadvantage). My drugs come

under Medicare part D, which was supposed to give seniors relief from high drug

prices, but in many cases it has made matters worse. There are a bunch of

convoluted rules; drugs are partially paid for by insurance UNTIL you've used

$2400 worth, then you fall into something called the " donut hole " and have to

pay FULL PRICE until you reach something like over $3000 worth, then you get

your drugs almost free. Makes no sense at all.

I have no idea what the (censored a-holes) in congress were thinking when they

passed this bill, but you know they had to be in cahoots with the pharmaceutical

companies.

I'm on 2 expensive prescriptions, Cymbalta and Provigil (modanifil). I had been

paying about $120 for 100 days worth of each, which was barely manageable. But

when I went to pick up my Cymbalta last month I was told I had hit the donut

hole, and 100 days worth of Cymbalta was..,,,are you sitting down?......$685

dollars. When I run out of Provigil it will be the same story. I was in shock,

but I need those drugs, they make a tremendous difference, they enable me to get

through the day, so I paid, and I've been taking half the dose to make it last

longer, so I'm feeling only half alive, but without it I feel totally dead. At

the beginning of next year I get the discount again.

The Provigil works for me, and I hope you can manage to try it. Good luck,

Holly.

Ruth

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