Neurontin in the News/ class action are coming

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

  1. judywhit

    judywhit New Member

    did you guys see that on Dateline about Neurontin!!! If you are on this drug and did not see the program you must get the transcripts. I see major law suites ahead for this drug and Pfizer. I was given this drug twice and each time I got the script filled. each time I could not tolerate it. It was touted by my doctor as a wonder drug and that I should really get "tough" and try to stick it out until the side effects went away.
    How can we trust the drug companies products if they are lying to the doctors about the benifits. This is very scarry. This being such a new drug is reason for concern. remember fhen-phen![This Message was Edited on 07/11/2003]
  2. judywhit

    judywhit New Member

    It has been used for epilipsy for a few years. Being used for pain is one of the off label uses. This drug made me so loopy that I flushed it down the tiolet. I will use the opiods for pain. This is a very powerful drug. I was frightned by it when told to take it and the side effects. It is a wait and see type of thing I guess if it is helping with your pain....then it is a coin toss.
  3. wishbone

    wishbone New Member

    Judy, At first it made me feel like I was in LaLa land,but I have gotten alot better with it, by taking low doses and going up slowley with it. I also have to take opoids for pain, but without the neurontin I don't think I could live because my nerve damage is so bad in my foot. your infomation has been very helpful tho. thanks Wishbone also (Judy)
  4. vinetti23

    vinetti23 New Member

    i was saying on another post that dateline spun this story into something much bigger than it really was...

    but i will say that one part was disturbing.. when they quoted the sales manager saying:

    "you tell doctors that they aren't to take a patient off neurontin untill they see no effects at 4800 mg per day... take the patient up to that dose before you make your call to take them off"

    can you imagine how much money they would make at 4800 mg per day?? And testing out each patient UP TO that level? OMG! That's a little insane. Some people can't even tolerate 100 mg per day. Neurontin is a weird drug. You either love it or hate it I think. Probably one of the most unusual spectrum of responses...certainly no tylenol.

    Also, isn't it also up to the doctor to do his/her own research, talk to collegues, & read the PDR and see what the drug is about? you cant just listen to drug reps if you are a responsible doctor - drug reps only paint one side of a picture...

    i dont get why they brought the bipolar lady in that show... they were trying to prove how off-label uses caused her to have a manic episode...but i think the fault here isn't just on the parke-davis sales force (and who even knows if her doctor was ever visited by a parke-davis rep?) ... the fault is also on the doc who gave a BP patient neurontin (which is totally unproven for BP) as their only med. Also, BP is a very hard illness to treat (sound familiar?) so bringing in one BP patient and saying "neurontin didn't work for me" is not really fair.

    sorry i am just still annoyed by this dateline tonight... i have taken the drug for 2-3 yrs "off-label" and i think the story was just totally skewed. It has really serious implications if drug companies start banning off-label uses. can you imagine? i.e. if a doc could get sued for prescribing a drug off label - we'd all be worse off i think.

    Really, i think the scientist himself is out to get money from the lawsuit (dateline said he'd get up to 30% of the class action...if/when there is one) which amounts to millions. if he is so ethical (as he proclaimed in the show), i suppose he will be giving those millions back to the people who had bad neurontin reactions?
    [This Message was Edited on 07/12/2003]
    [This Message was Edited on 07/12/2003]
  5. fibrodoll

    fibrodoll New Member

    I take 2700 mg a day for leg pain. I was a little groggy when first started but worked up dose slowly and I have no side effects now.

    I wouldn't be able to walk without this med, my legs were hurting that bad.

    It sounds like this lawyer is trying to make some fast cash. Also that womens doc is at fault for giving her this med when she is BP, the doc should have been more careful since she has a chemical imbalance of the brain.

    I hope this bull doesn't cause problems for patients with pain who benefit from neurontin. Bye, Valley.
  6. Mar19

    Mar19 New Member

    ...but I'd take whatever they said with a grain of salt. There are so many of those news magazine shows, they have to pretty much scape the bottom of the barrel for stories and then sensationalize whatever it is they have found. I just started taking Neurotonin a few weeks ago with minimal side effects, and it seems to be helping with my pain levels and also allowing me to sleep for longer periods during the night. I've been working with my doctor for years; I think he's wonderful. Never in a million years would I even consider that he was giving me a drug just because some pushy salesman influenced him. I've seen many drug reps in my visits to various doctors. For the most part, they are treated like the pests they are. And as far as a class action suit? Sounds like some money hungry lawyer is hearing " AND media exposure!!"
    I trust my doctor, and if you trust yours, realize he's trying his best to help you with this DD the best he can. Maybe the Neurotonin is right for you (or me), if not...well it's back to square one. As for me, I'm going to keep on trying until I make some progress against this miserable disease. I want the old me back.
  7. franners

    franners New Member

    Dateline has to make things more than what they are to get our attention... I was glued to the set to see what they were saying cause I take 5200mg and am ready to increase I think...
    I do have some mild tremors and twitches, but I have to evaluate what is more important to me, pain or some mild side effects.. It dose decrease the nerve pain but I still have deep pain.. But I wouldn't stop it..
  8. Mikie

    Mikie Moderator

    The danger is that docs have no time to research everything and depend on the reps for everything. What the company did was to misrepresent a scientist with a PhD as a "doctor" who had expertise in all kinds of medical areas depending on which specialist he was talking to.

    Even when docs were trying to read journals, the company was evidently writing articles and then finding docs who would sign as authors for money. That's fraud big time.

    So, here's the situation: A doc gets a visit by someome presented to him as a medical doctor who is a specialist in his field. He tells him this drug is good for some off-label use. The doc then reads an article in a medical journal that this drug has worked well in studies. What's the doc going to think? On top of that, the company paid the docs to let sales reps follow them around and paid for vacations to "educated" them about the drug. Look around the next time you go to the doc's office and see how many supplies, like tissues, are freebies from the drug companies.

    The danger of this, and this is why they had the BP woman on, is that when a patient is being prescribed a totally useless drug, she is not getting the drug she needs.

    Neurontin has been approvied by the FDA for use in treating nerve pain.

    My fear is a crackdown on off-label uses for this and other drugs in areas where they are helping. Klonopin is one of my most helpful drugs.

    What the company has apparently been doing may have harmed patients and is certainly fraudulent. I have believed for a long time that there is too cozy a relationship between doctors and the pharmaceutical companies. I don't want to see off-label use of helpful drugs go away, but this company has gone way over the top in the ethics dept.

    Love, Mikie

  9. sofy

    sofy New Member

    Mikie summed it all up very nicely but in the end if a lot of law suits happen some congressman will want to get his name in the news and wave the flag of saving the poor sick people from the bad guys and we could loose our ability to get drugs for off lable use.

    That could be worse than anything for us all. We are always begging for help and new ideas. well if it all has to be proven with a billion dollars and many years of testing then we will all be dead before any breakthru happens.

    The doctors will cover their backsides and not prescribe ANYTHING that is not absolutely on label. That could wipe out a lot of scrips for a lot of us.

    Twice I was solicited to participate in a class action suit for lawyers who make their living doing this. I could have gained a few dollars while he raked in millions but in the end I knew it was not about protecting anyone from anything. It was about providing a very grand life style for a very crafty lawyer. I declined to participate in such s perversion of our legal system.

    If you look at the tobacco law suits and see the multi millions a handfull of lawyers made and who else got anything it is absolutely apalling that this can happen. And they wonder why layers have such poor images. They earn it by not policing themselves from such horrific behavior by the worst of the worst.
    [This Message was Edited on 07/12/2003]
  10. Chelz

    Chelz New Member

    Judywhit, Not only is it neurontin, but you should check out the lawsuits that are popping up with SSRI's, like Prozac and Paxil. Just like antibiotics have been abused, so are these drugs. I blame the pharmaceutical companies more than anything. They are in the business of making money, and when it comes to mood altering drugs, I feel they hit Americans hard with this. One good thing is people are becoming more and more informed about the drugs they are taking by researching them, posting messages about them and so forth. This news about neurontin doesn't surprise me at all. How sad. Hugs, Chelz
  11. annepat

    annepat New Member

    Re: Pfizer. As pharmas go, they seem to be one of the better co.'s. they inhereted Neurontin from the Warner Lambert buyout, so they knew that they were inhereting the liabilty. I suspect that they will settle the case as soon as possible. One of my docs said that Warner Lambert did over market the drug, but then he went on to say that he still finds it extremely useful.

    Re: off label use-right now, I'm struggling to get the necessary dose of azithromycin paid for by my health insurer. My concern is that health insurers will greatly benefit from this lawsuit. Health insurers are leveraging formulary restrictions by limiting drug reimbursement and redefining on lable use for on patent drugs.

    When it gets to the point that a health insurance company will only reimburse for particular bacteria-right down to particular bacteria genus/species, which is what is happening in my state, then you've got a bigger problem.

  12. Plantscaper

    Plantscaper New Member

    My mother uses it for her nerve pain, due to severe Peripheral Neuropathies...
  13. basket

    basket New Member

    I was put on Neurotin for Bi-Polar because he thought it would also help with my pain. I increased the dose slowly and stayed on it for 2 months. I felt like my brain had been stolen-It was a living hell-I couldn't concentrate or add 2 + 2. I felt like I was locked behind my eyeballs. My doctor has treated me for over 10 years and I trust his judgement-I think that he must have been visited by one of those super salesmen.

    By the way, after I started the drug I started asking around and I swear everyone I talked too was either on it or knew someone who was-I thought I was the last to know about this great wonder drug-it is poison. Run!!
  14. rbtheidmanhabs

    rbtheidmanhabs New Member

    I have been on Neurontin for the past 2-2 1/2 years now and I have had very good results with it.Yes there are some side effects as there are with every drug you take.You just have to make sure you are aware of all the side effects.Get pharmacy to give you a print out and look it up on the net as well.Otherwise it is a very good drug.
  15. dolsgirl

    dolsgirl New Member

    have side effects. The side effects usually go away after awhile if you can ride them out. Some meds have worse side effects then others.

    People frequently take meds before reading all the information that is available & making a choice to take or not to take.

    For me, I preferred to not take this particular med, but that is my own personal choice.

    I know of alot of people that have been helped by it. You have to find what's good for you & do your own research. dolsgirl
  16. darlee

    darlee New Member

    My husband called me to come watch that Dateline eidtion-very onesided- sure they pushed it unethically for unapproved as of then and now medically approved uses, but one Bi Polar patient has no results with it. As John Staussel would say GIVE ME A BREAK! Neurontin gave me the most relief ever of my never relenting sciatic and back pain from the Fibro- I was just telling my husband, that even if it took ten years off my life, I would choose to take it. I am no longer in terrible agony. Besides, layinglow is right-very few side effects and it is being studied and found to have efficacy in BP and other disorders.

    Don't take my neurontin away! darlee Hey , we should post to dateline , huh?
  17. kredca4

    kredca4 New Member

    How a Med. can work so well for other's, and not for some.
    I can't take the Neurontin, it made me Anxious, wired, and fidgety, my mind was very active, wouldn't shut up, and I already talk to much, lol, so I didn't need that.

    But there are other's who are Helped by it, so I don't think, that any Show will ever truly get the Facts right, because they go for the , Dark side of the New's, I mean is anyone really Happy after watching thoes show's?

    We keep hoping that there will be a Show that can really Help us, instead of it being lopesided. But that's how Producer's think.

    I'll have to see if I can find the article and print it out,
  18. kuntryhart

    kuntryhart New Member

    I took Neurontin for several months, and it seemed to be a miracle at first, but then it didn't seem to do anything, so I'm now on Gabitril. It seems to be helping, but had to learn to take it before bed to live with the fatigue it causes me. Kuntryhart
  19. Tibbiecow

    Tibbiecow New Member

    while doing a search regarding migraine prevention, an off label use. Came up with the things Mikie mentioned, the Phd's being posed as MDs and lies about research showing neurontin being effective where it was not. The buzz at the migraine websites was that neurontin was not very helpful at all to prevent migraines. Decided at the time to try another migraine preventive. (Incidentally, another anti-epileptic, off-label drug, topamax.)
    Later, when fibro pain flared, I went looking for something to help, and came up with neurontin. The buzz at the fibro sites was that some people, while not all, found that it decreased their pain. The action of the drug was to decrease the pain threshold, and that was precisely what I needed. So I am on Neurontin, 600 mg 4x a day, on patient assistance to afford it, and glad to have the opportunity to take drugs off label.
    As for the Dateline thing, maybe it was one sided, but SHAME ON THE DRUG COMPANY for what they did pushing their drug and making it out to be what it was not, and phonying up research.