A freind of mine has been taking Cylert (Aka Pemoline) and it is no longer being manufactured but there may be supplies in very small amounts in some pharmacies dotting the countryside. Evidently this is the only med that has helped him and even the former manufacturers no longer have a supply.
Him and a bunch of friends (like me) have literally been calling everywhere to find all stock still sitting on pharm shelves as soon it will be past the sell date and gone forever. There have been minor success, about 1 in a hundred places called have small supplies left. All of Walgreens is out.
His doc is willing to write scripts of any size to get whatever is left and he would even be willing to fly to another country to get this if needed but many discontinued it much sooner than the US. Yes, they know the dangers but this is the only med that works for his narcolepsy. He has talked to previous manufacturers all over the world and then some.
Anyhow, would anyone be willing to check with their local pharms and hospitals for this med to help this man out?
I am not a nurse (yet!) so I will not weigh in on any of the issues already discussed, however I question if stockpiling a drug is a good idea, don't the active ingredients lose effectiveness after a period of time? Isn't that the point of drug expiration dates? Can't using a drug after the expiration date make it ineffective in the best case and dangerous in the worst?
If there is such a small supply of this, no longer available, medication what is the man going to do when there is no more? He'll have to consult with his doctor to find an alternative. It may be better that he go ahead and find an alternative now.
contacting the fda to verify the information i stated is very easily done as all the information on here is true, and they will confirm that. also contacting the manufacturer is easily done as well. it is being considered as an investigational new drug. since so many seem to be interested in poking holes in this, who is going to be the volunteer to call the fda, etc. on this one, certainly someone is interested in finding out the truth and not posting personal opinion and false information.
this medicine is very stable and that can be verified by contacting the fda or the manufacturer. he has been assured that it will be safe and stable for several more years. any med sold has to have a sell by date. some are not safe afterwards, and all meds vary. some can last for years such as a stockpile of nikkomycin that was made in the 80s and now same stockpile is being used in clinical trials for treatment and possible cure of valley fever.
this med is being made in a dutch country and turkey and possibly by one manufacturer in germany. their med laws make it impossible to export by a person.
i hope and pray the fda comes through for him.
here is his post from yesterday on the other site:
an update -- successes, failures, and possibilities
successes
someone suggested it would be good to see a list of our successes.
i believe i've mentioned all of these as they happened, but here's a compilation.
* someone in san diego found a small amount of the medication at a long's drugstore, on his second phone call. (kind of like winning money with your first-ever pull on a slot machine handle.)
* someone found a bottle in a hospital pharmacy in pennsylvania. (the selling date expiration actually had passed, but the pharmacist was compassionate.)
* someone found a bottle at an independent pharmacy in ceres, california. two days later he found some at an independent pharmacy in berkeley, california.
* someone found some at an independent pharmacy in greenwood, indiana. two days later she found a bottle in an independent pharmacy in indianapolis.
* someone found a bottle at an independent pharmacy in sacramento, california. a couple of days later, the pharmacy called to say, "we found another bottle on our shelves. would you like that one, too?" i enthusiastically replied in the affirmative.
false alarms
* a compounding pharmacist in portland, oregon, assured at ft volunteer that he could make all i need. the compounding pharmacist -- well, let's just say he turned out to be less than reliable.
* a kaiser permanente pharmacy in east los angeles told a ft volunteer that they had some on the shelf -- but wouldn't say how much or in what dosage. when i called, i was told, "we just sold our last bottle this morning."
it would have been unlikely that they had it and even more unlikely that it had sat on their shelves for a couple of years and then been sold on the very day that someone else asked about it.
* someone found some at a walgreen's in san jose, california -- but it was expired. this time, compassion took a back seat to following company rules and, in fact, state law. (in other words, i can be disappointed that they wouldn't sell it to me. but i can't criticize them for following the rules.)
* someone was told a kaiser permanente pharmacy in central california had some. but when i spoke with their "call center" (more about them later), we went 'round and 'round and 'round, and i never could confirm it.
kaiser permanente
when i first began looking, i found a pharmacy outside of los angeles that had two bottles. when i went there to pick them up, i discovered it was a kaiser permanente pharmacy that had been listed in the yellow pages (actually, [color=#003399]www.switchboard.com) under a different name.
that got me all excited: what if other kaiser permanente pharmacies had 2 bottles on their shelves, too?
unfortunately, almost all kaiser permanente pharmacies use a call center. you cannot call the pharmacy directly. instead, you spend 10 minutes trying to explain the situation to someone who has been trained to answer the phone, and that person then puts you on hold while she calls the pharmacy and tries to explain to them what she doesn't quite understand herself.
if anyone has the direct phone numbers of any kaiser permanente pharmacies, it would be wonderful if you'd pm them to me.
compounding pharmacies
please don't waste your time. they cannot get the necessary materials.
distributors for compounding pharmacies
the companies that had been providing the material to compounding pharmacies no longer do so.
outside the u.s.
it seems clear it would be a waste of your time to call pharmacies outside the u.s. it's unlikely they'd have any, if they did they wouldn't be able to ship it to the u.s., and if i went to that country and brought the medicine back with me i'd be breaking the law.
(it's a "controlled substance," and i've always thought avoiding going to prison is a worthy aspiration.)
to be clear, however, it's legal to prescribe the medication in the u.s., and if a pharmacy has any it's legal to sell it to someone with a valid prescription.
manufacturers
i have spoken to the top executives at the company that created the original brand drug. they were very sympathetic and went to considerable lengths to help me find some...but were unsuccessful.
there appears to be one company in the world (located in the netherlands) that still makes the raw material, which they occasionally sell to a distributor in japan. (they don't know what that distributor does with it, but they're trying to find out.)
the people at the dutch company, too, were very sympathetic and patient. but they cannot legally sell any to me.
food & drug administration
here's how many people i've spoken to, how many companies i've contacted, how many resources i've explored:
this morning someone from the fda called me, seeking any information i could provide regarding the medication, what types of patients had been using it, whether there are any alternatives that work (answer: no), etc.
he had been given my name by one of the companies i had spoken with. he feels my only hope is to submit a compassionate investigational new drug (ind) application and hope the fda -- after lengthy investigation -- approves it. he didn't want to estimate the odds of success; the decision would be made by another fda department.
i will ask my physician to volunteer as the ind sponsor, arguing the case that this is a unique drug needed by some individuals who don't respond to alternative treatments.
convincing the government to change its own decision seems to me like a long shot, but i'll follow through on it. even if eventually (and miraculously) they agree, it would take quite a while. (there are other hurdles involved, but i won't bore you with them.)
running out of time
it seems that of the supplies that still remain on the odd pharmacy shelf, the latest expiration date (for selling, not for using) is june 2008. i know some are expiring in february. so....well, soon there will be no possibility of finding any.
but at the moment, there still must be more, here and there. i'll keep calling pharmacies.
and i'll continue to be grateful to any of you who do so, too. (and to anyone who tried, struck out, and found it all too discouraging: thank you very, very much for having tried.)
I got my pharmacy degree in 1994, and I don't think I have ever dispensed Cylert although I have seen it on shelves (I have done a lot of relief work).
Yes, it was used extensively for ADD, and by all accounts seemed to work very well for that purpose, but the liver toxicity outweighed any benefits. Has your friend tried Adderall or Provigil, particularly the latter? I am quite aware that it's very expensive.
A few years ago, I was in an antique store and was looking through a stack of old magazines. I don't remember what it was but it was a mainstream women's magazine from the late 1960s. One of the headlines was "A Pill That Makes You Smarter." Guess what? Cylert.
Yes, when a drug really works and it's removed from the market, it can be very disastrous for those who really need it. My brother, who is not in health care, worked with a woman who had a rare form of arthritis and Vioxx was the ONLY thing that worked for her, and she never had a problem with it. She asked EVERYBODY if they had any left over, and managed to save up about a year's supply which would by now be long gone. We're having the same debate on another site right now about animal vs. human insulins.
xoyw01
19 Posts
I am not a nurse (yet!) so I will not weigh in on any of the issues already discussed, however I question if stockpiling a drug is a good idea, don't the active ingredients lose effectiveness after a period of time? Isn't that the point of drug expiration dates? Can't using a drug after the expiration date make it ineffective in the best case and dangerous in the worst?