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-   -   Taking Pemoline (http://www.addforums.com/forums/showthread.php?t=93609)

SfumatoPants 12-03-10 03:54 PM

Taking Pemoline
 
First post in ages!

I am moving to Japan in the new year, where I am not able to continue with my current prescription of methylphenidate (doctors are severely restricted in their ability to prescribe this drug, so most avoid the issue by refusing to have anything to do with it).

After having discussed my case with a doctor in Tokyo I have found out that my only treatment option is Pemoline. Pemoline is still widely available in Japan as it has very low reported incidences of abuse (unlike methylphenidate which was the subject of a television scare campaign that organized crime was selling it to school kids as cocaine - this resulted in the government severely restricting access to the drug in 2007 - yes, it's absurd).

I have read as much as I can about Pemoline and it seems to me that it has an undeserved reputation for being harmful (liver failure in anywhere from 11 - 13 children, depending on the source, using both Pemoline and Methylphenidate together). People refer to the drug as being "banned" by the FDA, but this does not seem true. It appears that the manufacturer voluntarily stopped manufacturing the drug since the profit from sales did not outweigh the possible payouts to lawsuits - basically medicine by accounting.

My question is for those who have used Pemoline in the past. Was it effective? Did you have any problems with it? How would you compare it to any other medication that you now use?

Despite the evidence to the contrary it still makes me nervous.

Possum 12-13-10 10:48 AM

Re: Taking Pemoline
 
Gee, I'm moving to Japan!

Seriously, cylert (pemoline) was the first drug I was prescribed for my ADD. Nothing has worked as well for me since and that includes adderall and dexadrine.

I took it for 6 years and was extremely upset when it became no longer available in the US. I took a fairly high dose and never had a problem.

The possible liver problems was a rare side effect that got blown way out of proportion. A simple blood test twice a year to check for elevated enzymes will ensure that you are not having some adverse response to cylert.

For me it was a safe and very effective drug.

SfumatoPants 12-13-10 12:56 PM

Re: Taking Pemoline
 
Thanks for your response.
No adderal or dex in Japan, they are Class 1 narcotics and illegal.
Methylphenidate instant release is only available for proven narcoleptics and no doctor will prescribe it for ADD since it means a police and tax investigation.
Because it cannot be abused, concerta is available, but only to the age of 18, after which you are no longer considered to have ADD. Officially, adult ADD does not exist in Japan.
It's very sad to read the ADD internet boards in Japan and see how many people are suffering needlessly because of some politician that is using fear to advance their own career.

Dizfriz 12-13-10 02:11 PM

Re: Taking Pemoline
 
Cylert is a very effective drug and my experience with it with children has been good. As you are aware there are possible liver issues involved and you will need to monitor this from time to time.

As I understand it, there were several deaths from liver failure so it is a very real issue but not all that common.

The drug was kept on the market for a number of years as an alternative for those who did not respond to other treatments.

Good luck in Japan, I think I envy you.

Dizfriz

Possum 12-13-10 08:24 PM

Re: Taking Pemoline
 
I checked on the FDA site, and between 1999 and 2005, there was exactly one case of liver failure due to pemoline. Give me a break!

Info from the Mayo clinic dated Nov 2010 is written as if pemoline is still available. I wish.

Good luck in Japan!

Dizfriz 12-14-10 09:54 AM

Re: Taking Pemoline
 
Just from a quick search...There were several sites reporting this. This was one of the shortest.

http://playattention.com/attention-d...-discontinued/

Quote:

Company Cites Declining Sales for the Decision
March 25, 2005 – Cylert, a stimulant drug for attention deficit hyperactivity disorder (ADHD), is being discontinued by its maker, Abbott Laboratories. Abbott began selling the drug in 1975.

Abbott Labs, the maker of Cylert also available generically as pemoline, says it is pulling the drug because sales have steadily declining with revenues less than one million dollars this year.
The nonprofit group Public Citizen petitioned the FDA yesterday to remove Cylert – including all generic versions of the drug – citing an increased risk of serious liver problems and death from liver failure.
The petition says that as of May 1996, Cylert had caused 13 cases of acute liver failure, resulting in death or liver transplantation in 11 cases. The petition also says that from 1975-1996, there were 193 “adverse drug reactions involving the liver in patients younger than 20 years old.
I don't remember the year but I remember the use of Cylert being dramatically reduced after the studies concerning liver damage were published. It was seldom used after that.


It is a shame that it turned out this way. Cylert was a very effective drug for use with ADHD.

Dizfriz

SfumatoPants 12-14-10 01:12 PM

Re: Taking Pemoline
 
Quote:

Originally Posted by Possum (Post 982312)
Info from the Mayo clinic dated Nov 2010 is written as if pemoline is still available. I wish.

In my research I found that it is actually still is being prescribed on what the FDA calls an "experimental trial". This trial began about a year (maybe 2) ago. There is one pharmacy on the East coast USA (New York I believe) that supplies prescriptions. The difficulty, it seems, is getting a doctor to participate in the trial. There is a great deal of paper work that needs to be completed which deters most doctors from participating.

SfumatoPants 12-14-10 01:20 PM

Re: Taking Pemoline
 
Quote:

Originally Posted by Dizfriz (Post 982650)
I don't remember the year but I remember the use of Cylert being dramatically reduced after the studies concerning liver damage were published. It was seldom used after that.

The numbers indicate that Cylert was the #3 most prescribed ADD drug in 2002. Respectable numbers I'm sure. Once the liver tests and liability waiver were required people stopped taking it, and why wouldn't you? Told by your doctor that you need to go through the inconvenience of monthly/bi weekly testing to take your medication, my first question would be "what other medications are available Doc?" Imagine ignorant parents having to make this decision for their children... I would switch to something else, and I'm fairly well versed in science and logic. By 2002 there were certainly many other ADD treatment choices available.

Richard 02-10-11 12:07 PM

Re: Taking Pemoline
 
Hello all!
In response to a previous question: I used pemoline at varying dosage levels in the early- and mid- 1980s. I had no liver trouble, but I did suffer various side effects -- in my particular case -- which eventually lead me to discontinue the medication. Among these were:

very intense urges to urinate despite there being little urine in my bladder
(this never completely abated, even years later)

loss of motivation

loss of patience, and snapping at people very easily

loss of cheerfulness generally (apparently I stopped smiling)

heightened emotional intensity, especially negative emotions. (I wound up stopping the pemoline after I walked into my graduate advisors office after a bad encounter with a very egotistical staff member in our group and broke down into tears.)

suppression of "urgency," that is the drive to take action when potential danger looms

This was my particular experience; I do not think these are common.

Having said that, I know people for whom pemoline worked very well, and are upset they can no longer get it in the USA. I am happy to see that it is available in Japan. Is there a pharmacy there that will fill orders from the United States?

Rich

Possum 02-10-11 02:34 PM

Re: Taking Pemoline
 
Hi Rich!

Welcome to the forums!

A couple of months back I actually talked to an FDA administrator about obtaining pemoline. He told me that if I could find a pdoc willing to fill out all the paperwork required, I could take pemoline on an "experimental" basis. There is one pharma company in Holland which still manufactures pemoline for export to the US, and any pemoline prescriptions would have to be filled thru them. Most insurance companies will not cover "experimental" drugs, so the patient has to pay out of pocket. It was this last that finally forced me to concede defeat. I just don't have the money. :(

So, anyway, a US doctor would get into a lot of trouble for writing a pemoline prescription outside the FDA protocol.

I never had any of the side effects you describe from pemoline. For me it was a very effective drug and no liver problems, either.

I hope you have found a med that works for you as well as pemoline worked for me.

Richard 02-10-11 02:46 PM

Re: Taking Pemoline
 
Hello Possum and Co! One of the reasons I joined the forum was to see if there are any overseas sources for pemoline. I am confused: if pemoline has not been actually *banned* (my understanding is that Abbott simply withdrew it from the marked), then it would be legal to prescribe, no? Why would a physician get in legal/professional trouble for prescribing it? What is it's actual status? -- Rich

SfumatoPants 02-21-11 08:23 PM

Re: Taking Pemoline
 
In order to be prescribed Pemoline in Japan, you will have to consult with a physician or psych in Japan that would re-diagnose your condition. The diagnosis would have to meet the Japanese medical systems definitions of what constitutes ADD, or narcolepsy. This isn't much, if at all, different than North America.

In the USA, Pemoline is not illegal, it is just not widely available due to limited manufacturing, it must be special ordered, and part of the process of being prescribed the drug are the regular blood tests. These two factors result in the prescribing physician having to do a lot of extra paper work for each patient. Since the time involved is prohibitive, it will be difficult to find a physician that would prescribe the drug.

SfumatoPants 02-21-11 08:25 PM

Re: Taking Pemoline
 
I have not yet begun using Pemoline. I have about 7 weeks of methylphenidate left before I try the new prescription. I will post back here, my progress.

Richard 02-22-11 01:40 AM

Re: Taking Pemoline
 
@SfumatoPants: Thank you for that information. I guess the next question is if there are pharmacies in Japan that can legally and will ship Pemoline to the US to fulfill a US prescription.

SfumatoPants 02-22-11 02:37 AM

Re: Taking Pemoline
 
I would think that no legitimate pharmacy would ship drugs internationally, and a prescription can only be obtained from a doctor licensed to practice in Japan, who is practicing in Japan.


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