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  #1  
Old 04-02-11, 10:16 PM
rivered314 rivered314 is offline
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obtainingcylert/pemoline in the usa

Can someone please tell me how to legally obtain cylert in the us. It is the only medication that has worked for me, and I have been suffering from my adhd since 2005 when it was taken of the market. I have heard that with appropriate paperwork it can be obtained. Any info would be greatly appreciated.

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  #2  
Old 04-03-11, 09:00 PM
BeaSmith BeaSmith is offline
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Re: obtainingcylert/pemoline in the usa

The only way legally to obtain Pemoline (the generic for Cylert; Cylert no longer is produced) in the U.S. is to have a physician sponsor you as an "Investigational New Drug" (IND) patient.

Unfortunately, you are very unlikely to be able to find a physician to do that. INDs are for research physicians, who are accustomed to dealing with lots of paperwork over their years of formal research.

You, however, would need a "treating physician" (i.e., a doctor who sees patients) to sponsor you. Here's what that physician would need to do:

1. Formally apply to the Food and Drug Administration for an IND.

2. Fill out tons of paperwork required by that application.

3. Purchase the Pemoline directly from the one U.S. company that is allowed to sell it. The company can't sell it directly to patients or to consumer pharmacies; they can sell it only to a physician who has been approved for the IND.

4. The physician then must sell the Pemoline to you, at the same price the physician paid for it.

It truly is far more than just some paperwork. (I found that out when I asked my personal physician to "sponsor" me.)

I know you were hoping for a more encouraging answer. Over the past few years I have become something of an "expert" on Pemoline (I relied upon it to counteract something called Excessive Daytime Sleepiness). Although I would be thrilled to discover some hitherto unknown way of obtaining Pemoline in the U.S., my own research has included speaking with every company in the world that ever manufactured Pemoline powder and also exchanges of information with sympathetic FDA sources.

I'm sorry I couldn't offer you a more encouraging response.
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  #3  
Old 04-03-11, 11:10 PM
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Re: obtainingcylert/pemoline in the usa

Yep. Unfortunately, my experience has been the same as Bea's. I even called the FDA and talked to one of their representatives about the possibility of obtaining pemoline. Nope. Nada. Negativski. Pemoline worked better than anything else for me too. I was extremely upset when they stopped manufacturing it. Have you tried adderall? It's not the same, but it works better for me than the other meds currently available.

Your other possibility is to move to Japan (see the thread below this one).
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Old 11-23-11, 08:28 PM
Bouncingoffwall Bouncingoffwall is offline
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Re: obtainingcylert/pemoline in the usa

Short answer: you can't, unless you have money and know the right people.
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Old 06-10-12, 01:44 AM
bradd bradd is offline
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Re: obtainingcylert/pemoline in the usa

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.
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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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  #7  
Old 06-09-15, 12:30 AM
Headroom Headroom is offline
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Re: obtainingcylert/pemoline in the usa

Quote:
Originally Posted by Bouncingoffwall View Post
Short answer: you can't, unless you have money and know the right people.
Countless "thank you" to Bouncingoffwall for giving me the right idea after I tried every other way to obtain pemoline!
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