Dateline Neurontin Story - SO overblown...

Discussion in 'Fibromyalgia Main Forum' started by vinetti23, Jul 11, 2003.

  1. vinetti23

    vinetti23 New Member

    Did you see this? How rediculous was this???

    They turned a NOTHING story into this huge mountain controversy. OK - so Neurontin was promoted for "off label" use which goes against FDA regulations... Fine, I understand the story but how many people have BENEFITTED from that? Especially on this board? I know some of you tried it & didn't respond to it but I have and I remember the past neurontin poll showed a lot of people responded.

    The scientist on the show probably just couldn't sell the drug - and so he got upset w/ his performance at work and decided to turn in his own company for promoting neurontin for off-label purposes. Tons of drugs are used for off-label purposes bc the FDA takes 10 yrs to approve anything and in the meantime - people suffer. Depakote was used for migraines & bipolar 10 years before the FDA finally approved it. Neurontin could've been successful for bipolar- how would anyone have known if they didn't try - they did have some anecdotes that it was successful. Sure enough neurontin IS helpful for pain in some people.

    It was even more rediculous when they go "we can't just prescribe drugs based off of anecdotal reports - we need real scientific data" - ok I agree w/ this (I have taken enough stats courses) but then they bring this ONE woman on to TELL her ONE anecdote about how neurontin didn't work for her bipolar disorder and she ended up in the hospital. I thought anecdones were useless data points?

    This is just such sensational & irresponsible journalism.

    It's a good drug for a lot of people for a lot of uses... and Neurontin is not the only drug that is prescribed for off label uses. I think 1/2 my medicine cabinet is full of drugs prescribed for off label uses.
  2. tulip922s

    tulip922s New Member

    My sister-in-law who suffers from bipolar was just prescribed Neurontin 6 weeks ago and has been in a horrendous manic state every since. In fact, we were called over last night to help peel her off the ceiling.

    We're taking her Monday to the doctor to have her put back on her old medicine which did work for this condition. Focus of show appeared to center on bipolar/neurontin but did question other uses. Tulip
  3. jadibeler

    jadibeler New Member

    I used to trust everything I heard on Dateline and such shows but I have come to realize that they are notorious for overblown, alarmist stories. And that does not help!

    Copy & paste your e-mail to Dateline. It's good.

    JoAnn
  4. vinetti23

    vinetti23 New Member

    it really can only be an add-on for bipolar...not solo therapy. she needs to be on a standard drug (lithium, depakote) before she can add neurontin.
  5. donna13210

    donna13210 Member

    See post dated 7/11/03 @ 7:02 pm posted by Jen F, titled:
    "Check out Dateline on NOW on NBC"

  6. Mikie

    Mikie Moderator

    Was the apparent fraudulent behavior of this company and their total lack of ethics for the sake of profits. To misrepresent a PhD as a medical doctor with knowledge in specialities, to compensate docs for saying they authored articles in medical journals written by someone else, and to compensate docs for playing ball with them is just awful. It does not help patients, which should be doctors' main concern, and can actually harm patients like the woman with BP disorder. The harm is not that taking the Neurontin would hurt patients; the harm is that their docs may have taken them off their regular drugs which were helping them. I see this as a huge big deal and it should be stopped.

    What I am afraid of is that by perpetrating this fraud on the docs and patients, they may have ruined it for those of us receiving benefits from off-label uses of drugs like Neurontin.

    It saddense me that we have become so used to underhanded business dealings by large profitable companies that we don't see this as any big deal. It is a big deal. I believe there have been many patients harmed by docs who are too dependent on, and cozy with, pharmaceutical companies.

    Love, Mikie
  7. BMOUTH

    BMOUTH New Member

    Has anyone got any data on MS? I've been DX since 2000.
    I've been taking Neurotin (1800mg daily) for 3 years at least, and Topomax for at least 1 year (250mg daily) for pain. Sometimes I don't think anything works.
  8. Achy-shaky

    Achy-shaky New Member

    Wow, I am mad that I missed the show now. How alarming! But then shows like Dateline need stories that attract viewers so it was probably blown out of perportion. Everyone needs to write and tell them how we feel.

    I had no idea that Neurontin was even used for bipolar. My daughter has bipolar and takes it but it's for the FM pain and to help her sleep, not the bipolar...she is also on Depacote which works pretty well even though she still has some episodes but they are not as severe.

    I'm a big believer in Neurontin for my nerve pain...if it wasn't for it I don't know what I would do because I've had adverse reactions to so many drugs including narcotics.

    Thanks for bringing this to our attention.
    Blessings,
    Shaky