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Old 08-26-12, 11:41 AM
PriscillaR PriscillaR is offline
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Re: obtainingcylert/pemoline in the usa

Quote:
Originally Posted by bradd View Post
It's amazing how a system which is supposedly there _solely_ to protect citizens from harm, is in fact itself an agency of harm to many due to politics, methods and policies that deliberately render medications which certain citizens need, virtually impossible to receive.
I don't want to but I have to agree with you. I had to leave my career in 2008 because I could no longer get pemoline. I could not find any doctor to sponsor me.
I had originally gone to the FDA about 2005 or 2006 to see how I could get it. At that time they gave me a website of compounding pharmacies. I chose one closest to me.
In other words I helped lay the groundwork for what is being done now but in the end I lost.
I could not afford the $900 + a month this old and very cheap medicine costs now because I had no income. This is totally unfair as this was the only drug that helped me. I have taken others but they are no more effective than drinking a couple of quarts of coffee a day.
I have gained close to 80lbs since 2008. My short term memory no longer exists. I went from being a productive person to nearly a vegetable.

I am on antidepressants and Nuvigil which I had to beg my insurance co to pay for. This drug costs over $1200 for a 3 month fill, my cost is currently $80 which is a lot for someone on SS Disability,takes other medications & trying to take care of other medical issues.

There was NO reason to take this med off the market except for other BIG drug companies to make a LOT of money on their newer drugs.
I am wondering how long it will continue to be investigational. Seems like 4 years should be long enough.
I understand that Abbott Labs is now acting as a liaison with the FDA. They originally marketed pemoline as Cylert before their patent ran out. Pemoline was used in France for many years before it was approved in the US.
I certainly hope it becomes available to all who need it at an affordable price soon.
The only thing I can add is that maybe continue to contact the FDA. James Bona was my contact person there. Because I worked for the Federal government I am guessing his e-mail would be James.Bona@Fda.Gov unless they changed their e-mail system or he is no longer there.
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