View Full Version : Taking Pemoline


SfumatoPants
12-03-10, 03:54 PM
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
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
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
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
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
Just from a quick search...There were several sites reporting this. This was one of the shortest.

http://playattention.com/attention-deficit/articles/drug-updates-adhd-drug-cylert-discontinued/


Company Cites Declining Sales for the Decision
March 25, 2005 – Cylert, a stimulant drug for attention deficit hyperactivity disorder (ADHD (http://my.webmd.com/content/article/102/106852.htm)), 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
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
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
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
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
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
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
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
@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
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.

Richard
02-23-11, 01:43 AM
The business of filling prescriptions internationally is not something I've looked into before. A few years ago, the State of Wisconsin set up a program to assist people in Wisconsin on limited incomes with getting prescriptions filled by Canadian pharmacies. I suppose the legalities and practical difficulties of getting US prescriptions filled by a Japanese pharmacy for a customer in the USA -- if it can be done at all -- is one for an attorney who specializes in such things. I sure have no idea.

BeaSmith
02-26-11, 08:27 PM
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.

It's actually classified as an Investigative New Drug (IND).

The one U.S. company that has been given permission to import Pemoline powder can sell it only to physicians, who in turn have to sell it directly to the patient.

For an IND, an incredible amount of paperwork is required. Add to that the fact that the doctor has to purchase the medication, and it's virtually impossible to find a treating physician who will agree to this. (INDs usually are for research physicians at educational or clinical facilities.)

BeaSmith
02-26-11, 08:30 PM
The business of filling prescriptions internationally is not something I've looked into before. A few years ago, the State of Wisconsin set up a program to assist people in Wisconsin on limited incomes with getting prescriptions filled by Canadian pharmacies. I suppose the legalities and practical difficulties of getting US prescriptions filled by a Japanese pharmacy for a customer in the USA -- if it can be done at all -- is one for an attorney who specializes in such things. I sure have no idea.

There are two things that prevent an American from getting a Pemoline prescription filled by a Japanese pharmacy.

1. Japanese pharmacies will honor only prescriptions from physicians who are licensed in Japan.

2. It now is illegal to import Pemoline into the U.S.

SfumatoPants
04-04-11, 08:55 PM
I am still working through the last of my methylphenidate prescription. I found that at one point or another, over the last few years, there were as many as 7 different posters residing in Japan. I have tried contacting each one but it seems that their accounts have gone dark. I'm posting this with key words, such as Japan, Tokyo, Osaka, ADD, ADHD,Pemoline, Betanamin, in order to try to attract someone who is or has lived in Japan and has gone through a similar experience to me.

Possum
04-05-11, 12:46 AM
Drat! I wish we could trade places. You can have my old prescription for methylphenidate that I still have laying around here somewhere, and I'll take yours for pemoline. It all just goes to show what a huge fake the big pharma industry is. Japanese people can take pemoline with no problem, while occidental people drop dead from liver failure at the very sight of it? Americans can wolf down methylphenidate with nary a care, but if a Japanese ingests so much as a nanogram, it's immediently fatal? Give me a break!

cookie karrip
08-02-11, 07:49 PM
I am years late in writing this and probably will never be able to find if someone answers this--but --there goes.... I am ADD and have narcolepsy plus I have Cfids with fibromyalgia---CYLERT was the only med. that really helped me, but I had to take a very high dosage for it to work...and I had blood draws every other week---with no problems for years. I was sick when they stopped making it---I was able to organize things , it helped with strength and stamina, and even helpedwith the severe pain ----my handwriting was much better---and I could focus on the task at hand. now I am on 3 different physostimulants and at least I am not asleep all day , but I still can't "get it together". My doctor would prescribe it for me if I could get it somewhere. Over the past few years when others have written about it , has anyone learned if it is being made in the USA? I am not getting any younger and it would be wonderful to get my life back lol Cookie K

SfumatoPants
12-07-11, 09:12 PM
It has been a while since I last responded to this thread, and given the interest that some seem to have regarding pemoline, I thought I should post an update.

I have now been in Japan for about 10 months and I have successfully been receiving treatment for the last 8.
I'm sorry to disappoint those who want to know, but I am not currently being prescribed Pemoline. I am taking Concerta.
Pemoline is prescribed in Japan, but given the requirement of having to undergo a monthly blood test, combined with the restriction that all psychiatric medication (Only psychs can prescribe for ADD, anxiety, depression, bipolar, etc... in Japan) prescriptions are only 1 month in duration, it is often though to be more trouble than it's worth - taking pemoline would involve 2 required medical appointments per month, one with your prescribing psych and one with a medical doctor for the blood test.
For this reason Concerta is prescribed first.
I couldn't honestly tell the psych that I was having any problems with the Concerta, so on it, I have stayed.
To those of you outside of Japan wanting to take Pemoline, please lobby your respective health authority. You cannot obtain Pemoline from Japan unless you live here and are registered on the nation's national health plan.

SfumatoPants
01-20-12, 04:16 AM
http://www.rad-ar.or.jp/siori/english/kekka.cgi?n=1476

Possum
01-22-12, 02:38 AM
.
To those of you outside of Japan wanting to take Pemoline, please lobby your respective health authority. You cannot obtain Pemoline from Japan unless you live here and are registered on the nation's national health plan.

I tried calling the FDA and someone actually called me back. Long story short. Forget it, it isn't happening. Pemoline has been consigned to history, in part because it went generic there toward the end, so its not worth the trouble for big pharma to ressurect it. Those of us who were diagnosed ADD in the 90's may have gotten a prescription for it, and for some of us, pemoline worked amazingly well. But I don't think we are a big enough group to form an effective lobby, and fewer and fewer people know anything about pemoline as the years go by. :(

SfumatoPants
01-23-12, 10:57 PM
I now have an acquaintance here in Japan who is currently taking Betanamin for ADHD, and their opinion of the drug is somewhat less than glowing. They describe the effects as "non-existent", to periods of "caffeine-like" hyper activity.
Perhaps the fond memories of this drug by some on this board are just that, memories made better than the reality by the fog of time?
In any case, after talking to them about their experience I'm much more satisfied with my decision to stick with the Concerta. I had been thinking for quite a while that "maybe I would be better off if...", but no longer.
As Possum said, Pemoline may be consigned to the scrapheap of time, but there are many new medications available, based on the latest science. Living in Japan it's unlikely that I will see any of these, any time soon. I can't even look forward to the possibility of finding something that could work better for me. I'm on a one trick pony here, and if that pony dies...