Posted by wendy b. on January 26, 2003, at 12:46:28
[Post from Psychobabble: http://www.dr-bob.org/babble/20030125/msgs/137490.html ]
As directed by Dr Bob, complaints are to be redirected to this board, so I am moving the discussion from Babble to Admin.
The following was a response to an initial message from Hildi asking about the differences between Gabitril and Neurontin. She was looking for personal experiences with the drugs, but was going to find out other information on them before making a decision about whether to take them at all, or which one. MissLiz posted a link to an article from the NYTimes about the Neurontin "scandal," and another poster mentioned the unflattering NPR story about the drug, and posted the link to the NPR site. If you care to read the thread, I've referenced it above.
MissLiz says:
> A whole lot of you all missed my point SO TOTALLY!
> 1- there are numerous double blind placebo controlled studies showing that Neurontin doesn't work for the off label studies the company claimed it was so wonderful for. They were done to try to get the stuff aditional FDA approvals. Neurontin either doesn't work, works for a few weeks/ months then quits, or makes people worse. Google it and see for youselves. The search engine is the patients best freind, learn how to use it.
> 2- Neurontin is a product that happens to be a drug. Do not kid yourselves, the drug co.'s are loyal to the stockholders and see us as cash cows to be exploited. Psych patients are the most easily kicked around group in our society, and a lot of us have federally funded insurance to milk. Our society is full of dangerous automobiles, crummy food, cigarettes, smog, and you're surprised that a bogus psych drug came along to pick your pocket?
> 3- This isn't about a New York Times article. There was a trial in Boston where all this came out, a whistle blower from whithin the company produced the same kind of incriminating evidence as the stuff that came out at the big tobacco hearings. Don't you people watch the news? Or Google drugs before you eat them?
> As long as you are all good little children and tolerate this kind of horrific treatment we will never get better drugs and better lives because a bunch of crooked businessmen will use us as human sacrifices to the bottom line. I think I deserve better, but the mentally ill are the most crapped on group of people in America because most patients won't take responsibility and say no, that isn't acceptable. A lot of us can't, but the people who can write their congressman about things like this can't be bothered. Spare me the self centered whining.
> 4- One last peice of reality, kiddoes. Drug company reps are the biggest source of your doctors continuing education. A lot of the drugs pushed for psych do work, but there's just too much money to be made for a Neurontin not to happen. Zyprexa was surrounded by apalling scandal in its testing phase too, but I know half of you won't beleive it. Not until you get type II diabetes and a hundred pound wheight gain and all the other grisly fallout from that particular work of the devil. Read the book, "Mad in America" by Robert Whitaker for starters.
> I personally spent two years of personal crisis while on Neurontin wondering what the hell had happened to my mind. Then I refused to take it anymore and am returning to myself again. I'm not the only one. And I'm angry about it, I deserve better.
>
> misslizMissLiz was then issued what, to me, was a very appropriate PBC.
While I am the first one to expect that consumers will do their homework on the drugs they take, I admit that not everyone does. And while I use psychopharmaceutical medicines, I don't trust that the industry is looking out for my best interests. Only I can do that, with some amount of help from my doctors and other informed people. And I have *reasonable* expectations of the regulating agencies, but I also live in the real world, where I know nothing is ever perfect.
However, I really take exception to the insinuation by MissLiz that we're all just a bunch of misguided sheep bleating out there on the mental illness landscape. The people who post here are, for the most part, a very well-informed, intelligent, and articulate group of individuals. We don't need to be patronized in the way as MissLiz does here, calling us "kiddos," and talking to us from a self-styled position of "superior" knowledge and enlightened discernment. Her tone and her misdirected anger are inappropriate at best, and hurtful and scare-mongering at worst.
We all know that the pharmaceutical companies are making big money. Anybody who has to pay for their prescriptions out-of-pocket is quite familiar with high price we have to pay (in more ways than one) for our illnesses. NO ONE wants to be taken advantage of. But the FDA isn't something we can just get rid of overnight and replace with a more meaningful and fair system, one that would ultimately be in the consumer's best interest. I like Alan's suggestion (re-directed to PBSocial) about increasing the involvement of the NIMH for drug approvals. In the meantime, we have to limp along with what we've got at the moment - which is not to say that's all we deserve, but it is *reality* at present. America's approach to drug-testing and approvals, and attitude toward (illegal) drugs in general, are antiquated and contradictory, without a doubt.
Whether or not Parke-Davis hid information about the drug trials, and lied to consumers about its efficacy for bipolar illness, they did not market it for anything except as an anticonvulsant. Doctors, as we all know, can prescribe that a drug be used for off-label purposes. They do it all the time. So the story on the NPR link, with the photo of the boy playing baseball, who committed suicide while on Neurontin, was quite misleading, in that it was his doctor, not the big bad pharmaceutical company, who prescribed it to this seriously ill kid. Why he didn't prescribe lithium before trying one of the anticonvulsants like Neurontin would be a question for HIM to answer to the kid's parents, not Parke-Davis. Doctors know that the other supposed uses for the anticonvulsants in general are all anecdotal, and that the double-blind placebo studies cannot (yet) "prove," using empirically-based forms of inquiry, Neurontin's efficacy for bipolar illness. But I guess I'm not an empiricist.
So it would take a doctor who was willing to go out on a limb professionally, to prescribe Neurontin to such a patient. The fact is, though, they do it every day! For bipolar, for pain, for fibromyalgia, etc. Because they know it's relatively safe, virtually impossible to OD on, and it's worth a try because of the anecdotal evidence. It's certainly safe enough for a very large and growing number of doctors to have their patients try it. If people actually do experience relief from anxiety, pain, insomnia, or mood-swings, then that's enough for me.
I have been recently taken *off* Neurontin by a new doctor who believes a little too much in empirical forms of science and information-gathering. He says none of the anticonvulsants have been proven to work, so he took me off it. Before I went to him, I had already tapered down from a level of 3000 mg a day, because I didn't see any difference in the way I felt between that and 1200 mg a day, so if I could take less, I would. I didn't see how the drug was helping me all that much... That was fine and, not to contradict MissLiz or anything, it wasn't "hell" to taper off, as long as I did it slowly. Then, when I went totally off the drug -- surprise! My irritability and other depressive symptoms returned; as Mitch says in a post on the Gabitril/Neurontin thread, Neurontin increases his sociability. This is exactly what it does for me (much easier for me to deal with people at work, for example). So, this is no placebo effect, since I had a tendency to NOT believe that it was working before I went off it,and then had real symptoms return when I did. So come to find out, it was releiving symptoms that I had forgotten about, precisely *because* it was working well at the appropriate doseage.
The FAQ on PsychoBabble warns posters about taking someone's word about drugs, in the section on who to trust. That's what "Your mileage may vary," or YMMV to the initiated, is all about. Bob also likes to say "Caveat Emptor" a lot, too. So, really, MissLiz, we are have to power to decide what medicines to try, and decide for ourselves which meds work and which don't, based on our own experiences. I don't want that power or that right to be taken away from me by putting limits on doctors (what to prescribe for which illnesses).
Finally, I think it's important for consumers to ask themselves: what's the NYTimes's or NPR's interest in all this "controversy"? Ever think they're interested in selling newspapers or air-time? The news industry is not immune to screaming headlines about "scandals" and using scare tactics to sell newspapers, and if you don't think they rip us off as well, just like those nasty drug companies, you're kidding yourself, MissLiz. And you're doing a disservice to the readers and participants of this board, like Hildi, if you scare them away from a drug that could very well relieve their symptoms.
Sincerely,
Wendy
poster:wendy b.
thread:9021
URL: http://www.dr-bob.org/babble/admin/20021128/msgs/9021.html