Prescription for Disaster – 22 years later

Bitter Pills Fluoroquinolone Toxicity Book

In Stephen Fried’s 1994 Washington Post article, Prescription for Disaster, Fried describes his wife Diane’s terrifying reaction to Floxin (ofloxacin), a fluoroquinolone antibiotic. It’s a wonderful, award-winning article on which Fried’s follow-up book, Bitter Pills: Inside the Hazardous World of Legal Drugs, was based. I highly recommend that you read both the article and the book.

This quote from Prescription for Disaster summarizes both well:

“Before Diane’s frightening experience, I had always thought of prescription drugs as pretty much idiot-proof. Your doctor tells you to take them, so you do, assuming that the worst that can happen is they won’t work. It turns out the worst that can happen is that you drop dead. The next worst is that your body is permanently damaged. Less worse, but still not very good, is that you suffer for hours, days or weeks with something your doctor may or may not recognize as a drug reaction — from one drug or an interaction. It may or may not go away by itself.”

Though both Prescription for Disaster and Bitter Pills are about the hazards of prescription drugs generally, both have quite a bit of information about fluoroquinolone toxicity, and Diane’s personal story of a severe CNS adverse reaction to Floxin is discussed in-depth.

In Prescription for Disaster, Fried notes:

“I KEEP WANTING this story to end, but it never does. Late last year I got a call from a producer of Oprah Winfrey’s show. She wanted to do a program on adverse drug reactions because she had just had one — to Floxin. Diane and I appeared on the program, along with several other people we had met through the original article, and since then I’ve gotten a steady stream of calls. Many of them are from people who had almost the same reaction Diane did, but weren’t as lucky to have doctors who at least recognized a drug reaction and were willing to learn what they didn’t know about how to treat it. I’ve talked to people whose spouses have lost their careers in the aftermath of drug reactions, people whose fathers attempted suicide because of depression that seemed to have been triggered by quinolones.”

We all want this story to end. More than 22 years later (Prescription for Disaster was published in April, 1994), it is still going on. Thousands of people are hurt every year by fluoroquinolones. People are experiencing tendon ruptures that leave them in horrible pain, exhaustion that leaves them bed-bound, gastro-intestinal issues that leave them unable to eat, CNS issues that leave them unable to work, peripheral neuropathy that leaves them in permanent pain, and more. I sincerely hope that the story of people becoming chronically ill and disabled after taking Cipro, Levaquin, Avelox, Floxin, or their generic equivalents, ends soon. It’s not a good story, it would be nice if it ended sooner rather than later.

On the WONDERFUL site, http://fluoroquinolonethyroid.com/, the author notes the following about the publication of Prescription for Disaster in 1994:

For anyone who thinks that the FQ ADR’s are something new, think again. It’s an old, old story, this one, which actually goes back much farther than 1994. But this article highlights how Pharma, FDA, flox victims, the ignorant and dismissive medical profession, even publicity on shows like GMA, Dateline, Donahue, and even Oprah — they were all there —  it’s all happened before — way back in 1994. It’s all been completely ignored; and in fact, sales of FQ’s continued to increase and soar exponentially during the past 20 years. I, and who the hell knows how many others just like me, have been “floxed” since then. Had the FDA, Pharma, and the medical profession done their job back then, my life (and many others) might have been spared.

Don’t think Pharma or the FDA is just finding out about these ADR’s now. They’ve known. They’ve known for a very, very, long time. And they’ve done absolutely nothing about it.

So when you hear all the Pharma companies make their same old tired and outright spurious statements over and over again about how “Safety is our greatest concern, and these antibiotics have been prescribed safely for the last 20-30 years without problems,“ and the FDA says “We take these safety issues very seriously and are looking into it,“ you’ll know what bullshit that is. There is a historical record accumulating, and this article is just one example for you to post in rebuttal.    Remember:  the internet saves everything now. There will be less and less places for Pharma to hide as time goes on and the number of victims the world over continue to grow.

FQ’s are once again in the news. We can only hope that this time, it will be different.

Yes, we can hope that this time will be different. We need to stay vigilant though, and continually push, so that the pharmaceutical companies, the FDA, and even many doctors and nurses cannot get away with the lies of, “Fluoroquinolones have an excellent record of safety and efficacy,” and, “Side-effects are rare,” and, “There is no known mechanism for fluoroquinolones to cause multi-symptom, chronic disease,” and, “Multi-symptom, chronic diseases are in patient’s heads – they don’t really exist,” and, “Fluoroquinolones aren’t connected with autoimmune diseases, fibromyalgia, ME/CFS, POTS, arthritis, psychiatric illnesses, thyroid autoimmune diseases, etc.” Those lies have been told over and over again since fluoroquinolones first entered the market in the 1980s. Repetition doesn’t make them true, but it sure helps to reinforce the lie.

fluoroquinolone-lawsuit-banner-trulaw

There is plenty of evidence that fluoroquinolones are dangerous, destructive drugs that can lead to chronic illness and disability for many. There is also evidence that the mitochondrial destruction done by fluoroquinolones is similar to that of mitochondrial destruction found in people with autoimmune and other “mysterious” diseases. The evidence isn’t even new. They’ve known since 1994 that these drugs are damaging to the point of being disabling. They know, they just choose not to do anything meaningful about it. It is possible to put meaningful restrictions on dangerous drugs that ensure that they are only used when appropriate (in life-or-death situations) and that proper informed consent is given before the drugs are administered. Rather than making these meaningful changes though, the FDA and the pharmaceutical companies have chosen to largely ignore the problem.

Everyone who has gotten “floxed” since 1994 has been hurt because of willful ignorance on the part of the FDA. They claim, over and over again, that these reactions are new, and that they’re just now hearing about them. I realize that news sinks in slowly in a bureaucratic institution like the FDA, but 22 years is ridiculous and, frankly, unacceptable. They knew that these drugs were dangerous then, because people told them back then. They know that these drugs are dangerous now, because people have told them again. Research has also accumulated since 1994, and there are hundreds, if not thousands, of articles about the dangerous effects of fluoroquinolones published in journals (here’s a sampling of just a few – https://floxiehope.com/fluoroquinolones-links-resources/).

When is this going to stop? When will the FDA start doing it’s job and adequately regulating these dangerous drugs? How many more people have to get hurt by fluoroquinolones? How many more times do we have to scream at them and tell them what they already know – what they have known for more than 22 years – that fluoroquinolone adverse reactions are severe and devastating? It’s ridiculous. This mess should have been stopped 22 years ago. The FDA should have made meaningful changes to prescription guidelines for fluoroquinolones in the 1990s. If not then, they should have done so in 2008 when Public Citizen sued the FDA in order to get the black box warning about tendon ruptures added to the fluoroquinolone warning labels. Since meaningful reform didn’t happen then, how about now? The FDA just had a hearing about the risks of fluoroquinolones, and found that the risks outweigh the benefits in treatment for many common infections. They have the opportunity to enact meaningful change now, and they should do so.

I doubt that they will make meaningful, appropriate changes though. Business will go on as usual. People will continue to be hurt by fluoroquinolones. People who should know better (FDA personnel, Pharma scientists, doctors, etc.) will insist on saying that these adverse-reactions are rare, and thus insignificant and untrue. It’s a shame, because they are incorrect. These adverse reactions are severe, devastating, and not near as rare as they should be.

So… we have to keep screaming. We have to keep telling the news media about our reactions, writing to anyone who might listen, filing reports with the FDA, writing articles and blog posts, petitioning scientists, talking to friends, sharing articles, etc. We have to keep banging the drum until they listen.

I’m not sure how long this process will take. It’s been 22 years since Prescription for Disaster was published. I hope that it doesn’t take 22 more.

 

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12 thoughts on “Prescription for Disaster – 22 years later

  1. L June 16, 2016 at 8:10 am Reply

    This makes me so angry. How DARE they treat all these hundreds of thousands of lives (millions?) as just collateral damage for their greed. (BTW I contacted Oprah several times about this and got no response. Maybe the industry got to to her.)

  2. Ruth Young June 16, 2016 at 11:15 am Reply

    This makes me so angry that people’s lives are being devastated, our antibiotics’ efficacy is being decreased or eliminated and some people are even dying and it is all preventable but continues to happen anyway.

    Floxies from all over the world contact me because they saw my story on Floxiehope. Most of them seem to get better over time. But every one of them goes through a terrifying experience that affects every aspect of their lives including their relationships and their finances. Even those who heal go on with their lives not knowing the long term costs to their bodies of getting floxed and whether they will develop a neuro degenerative condition later or get cancer or have an aneurysm burst or be more prone to diabetes… The possibilities are many.

    And yet the floxies I know find ways to be positive while they go through hell, ways to hang on while their bodies and lives are falling apart and ways to live with hope instead of fear and despair. Instead of being commended for their incredible courage they are labeled as mentally ill and ridiculed by their doctors.

    This is real and it has to stop. We are not just all deluding ourselves because we read too much on the Internet. Something happened to us, something that produces similar effects in our bodies.

    I was telling my friend Diego, another Floxie, about these weird patterns I see sometimes when I sleep. I will suddenly be wide awake in the middle of a dream and looking at black and gray geometric patterns. Often they are spinning. I told Diego I was trying to figure out if the pattern was a fractal as it was actually quite beautiful and seems to be the same pattern every time. He was shocked and said that he sees those patterns too, except his never were spinning. Mine have also become transparent in the latter stages of my healing, and sometimes I will see them within a dream, as if I am looking through a curtain of this weird pattern. He said his have never been that way, at least not yet, but he had been awakened from sleep seeing a geometric pattern. It’s like our damaged brains could not give us sleep so they threw up this test pattern instead.

    But we both have had that experience and have never read of that symptom anywhere online. Diego was shocked that I said that because he had never seen it. Something similar happened to our brains or our nervous systems to cause that.

    Why are no researchers interested in what happens to floxed brains and bodies? How can so many of us not be in any way credible when many of us are highly educated professionals? How can it all stem from reading about it online when some people only figure out years later what happened by reading online? They suffer for years before they ever hear of FQ toxicity. How can it all be created in our imaginations when two people can have the exact same crazy symptom that had not been written about online (as far as we know) and that neither of us ever experienced prior to taking an FQ?

    I am starting to wonder if it is more than greed and if there is a desire on the part of some people in charge in the pharmaceutical companies and the FDA just to torture as many people as possible? Is there a psychopath (or more than one) in a position of power? Because even if you had a desire for money wouldn’t the intense suffering of thousands of people make you find a different way to get it? And the whole problem of bacterial resistance to antibiotics should scare the crap out of any of us, so who would knowingly contribute to it just to make a few bucks? They could in the end be dooming themselves to die from an incurable infection.

    I don’t understand why nothing is being done while the ranks of floxies grows daily. At what point will it be that almost everyone has been floxed or knows someone who has? Given that these drugs have a tolerance threshold, I think that day is coming soon if nothing changes.

    • Jason June 16, 2016 at 4:25 pm Reply

      Ruth what you are failing to comprehend here is that Pharma KNOWS about ALL the damages and suffering these drugs cause, ALWAYS HAS, and so does the FDA.

      Their business model is poisoning people for profit, and where ONLY sick and suffering people make them money, many become repeat lifetime customers, curing people is giving yourself a much smaller paycheck and threatens to shrink your business. Think about it how many “cures” have they EVER come up with? Like NONE or very close to it, compared to Natural Cures a true joke. Now put the 2 and 2 together. Do you really think they want to stop making people sick, including with Cipro? Of course not, most people will run right back to the Doctors, and the Doctors are TRAINED to give them more drugs for all the new symptoms, this is the reality of the system, it’s been like this for many decades, and will not change anytime soon they are all way too filthy stinking rich.

      • L June 16, 2016 at 4:34 pm Reply

        You nailed it Jason. I think what it will take is something akin to the world court coming after them. Don’t see that happening anytime soon. Or perhaps more individuals tried for criminal misconduct at the FDA and big pharma. It is disturbing beyond words. My take on the FDA FINALLY coming out with their watered down warning? I think it has something to do with the former commissioner being named in the levaquin lawsuit. This give the appearance that they are doing something, no matter how late or how watered down. And are most doctors aware of this latest warning? None that I know of. So, on another note—how ya doin Jason? (L, the artist formerly known as Linda…I changed it because another Linda started posting.)

        • Jason June 16, 2016 at 6:33 pm

          L – We have “room” for 2 Lindas here, or 3…. 🙂

          Yeah “Window Dressing”, something Wallstreet is infamous for, is also VERY common in Government Agencies, in fact Wallstreet I’m sure took a page out of their book. Very very unfortunate, all we can do is continue to educate as many as possible and keep screaming and putting pressure on them, maybe if Brad Pitt or someone I don’t know gets Floxed something will happen… (or near Civil War, storming the Gates of the White House with 100K might get enough attention but otherwise business as usual indeed)

          I am good mostly thanks and hope you are too! I have been meaning to come here for awhile and post some important info and new findings etc to help but have been buried in things. I may start a website for this because unfortunately I am still not working so can’t post as I was before, yet I do still desire to help people but since wife left bills have really piled up 😦 I’m going to try and make big push for the job now and then hopefully I’ll put up the site, I think I mentioned this to Lisa as well but do need to talk about it again with her. Did you get back working hopefully?

        • L June 16, 2016 at 7:15 pm

          NO, no work. I thought I had enough energy for part time work, but then today my knee made walking impossible. Ugh. Hoping this isn’t now a permanent thing. Plus I filed a lawsuit myself against the doctor and the pharmacy. VERY stressful., Writing my own motions, etc. Can’t really say any more than that for now. I also have really bad light sensitivity that makes fluorescent lighting problematic. Not a lot of jobs out there without fluorescent lighting. So just borrowing money, selling things on Ebay…just kind of eking by right now. 😦 And now with this knee thing…who knows. Luckily I had a cane lying around from one of my turns as Charlie Chaplin…:)

        • Jason June 16, 2016 at 9:10 pm

          Crap sorry to hear that, my knee goes bunk if I get too low on Mag, pretty much every single time and Mag fixes it. I bet the lawsuit is stressful, good luck you like all deserve a lot for this BS!

  3. Jb June 27, 2016 at 10:16 am Reply

    There will be no change in less we can sue which big Pharma has effectively putting into with the Mensing pleva case. The sad reality is that many FL OX I ES are part of the problem. They keep saying the drug has some benefit for saving lives. They’ve been conned into believing the safety and effectiveness data supplied by the pharmaceutical company. They’re just too naïve to understand what is really going along. And they are working against the ultimate good that could Come from just saying the drug must be removed from the market and going down that avenue full steam instead of. Half assed let’s change the label because the drug does some good, bs. This is why I no longer participate in the main Facebook group. Too many dumb people who are willing to open their mind a little bit.

    • L June 27, 2016 at 10:26 am Reply

      I would agree with you. But even people like Dr Charles Bennett, the researcher from U of So Carolina, who has been so instrumental in helping to get the word out on the dangers, continues to insist that he does NOT advocate for their removal. I wonder sometimes though if he feels like he needs to say that to save his own skin. I would like to have them removed completely or at the very least, used ONLY in life and death situations, and ONLY when there is not any other drug available. And now Bayer wants to buy Monsanto and Monsanto wants to put FLQs in herbacides and pesticides! That is the most disturbing, diabolical, reckless thing they could do.

      And as far as label changes—doctors aren’t reading them anyway! What value is that? These drugs, if they are to continue, need to be made impossible to get hold of except in extremely rare cases where there is NO OTHER drug available. As long as doctors remain willfully ignorant, they to not be able to access this kind of drug. Period.

  4. jb June 30, 2016 at 1:00 pm Reply

    L, can you send me a link with info about “monsanto wants to put flqs in herbacies and pesticides”? this could be helpful to me in some work that i’m doing for the cause! thanks!

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