Neither Fluoroquinolone Toxicity, nor Recovery, are Rare

Last weekend I went to a seminar that has absolutely nothing to do with fluoroquinolones, drug safety, or advocacy. In that seminar I sat next to a guy who was roughly my age (30-something), and I began to tell him about my experience of getting hurt (poisoned) by Cipro/ciprofloxacin. I was about ten seconds into my story when he said, “Me too – Levaquin.” Yup, he was a fellow floxie. We chatted for a while, and exchanged stories of fluoroquinolone toxicity, then got back to the seminar.

There are a few things about my exchange with him that I’d like to share. First, he has largely recovered. He got hurt by Levaquin about a decade ago. He had severe musculo-skeletal problems (but not a lot of the nervous system symptoms that many floxies experience), and experienced pain in all the joints in his body. He went from being young, athletic, and capable, to barely being able to move. His pain and loss of capacity was so bad that he went through periods of contemplating suicide. Thankfully, he made it through those dark and painful times. He didn’t give me many details about how he got through the last decade, but he did heal. All of his joints (with the exception of his knees) are now strong and pain-free. He is able to work, socialize, and has recently started to exercise again.

The main thing that helped him was time. Knowing that time had helped others through similar experiences also gave him hope that his body would recover if he gave it enough time. For him, the amount of time that it took for his body to recover was a decade. I know that ten years is a long time, and for some of you it may sound like an unbearably long time. For others though, I hope that it is helpful and hopeful that time healed this guy’s body, and that maybe, just possibly, if you give yourself enough time, your body will heal too. (Of course, I don’t know how much time will heal you, or even if time will heal you, but I see it as hopeful that time healed him – even if it was a long time.)

The second thing that struck me about my conversation with this guy is that if two people meet in a random seminar, and both of them have had a life-altering adverse reaction to the same class of drugs, maybe that’s an indication that these reactions aren’t as “rare” as Bayer, Janssen Pharmaceuticals (a division of Johnson & Johnson), the FDA, and all others in the pharma machine would like us to believe. A floxie friend noted the following in a brilliant essay she wrote as part of a legal analysis about the alleged “rareness” of fluoroquinolone reactions:

Another way the risks are minimized is by listing these reactions as temporary or rare. The latter may be true in a technical sense, but what does ‘rare’ actually mean? A quick search of fluoroquinolone victim online support groups reveals that membership for most of them numbers in the tens of thousands, and the FDA’s Adverse Event Reporting System database garnered 3,101 reports of severe adverse reactions to fluoroquinolones in the last quarter of 2013 (the latest data available) alone. These are unscientific and anecdotal statistics, of course, but given that this class of antibiotic was prescribed to approximately 26.9 million patients during 2011 in the United States alone, ‘uncommon’ translates to 2.69 million domestic victims and ‘rare’ translates to 269,000. In fact, many more probably exist but are given a catch-all diagnosis of an ambiguous auto-immune disorder like fibromyalgia or are labeled with some other malady like diabetes, heart disease, hypothyroidism, etc., that arose spontaneously. Also, as in my case, a patient may take one or more courses previously without suffering an entirely noticeable reaction. Additionally, there is an unwillingness of medical professionals to admit a connection between the drug and these reactions. This is perhaps because, at first blush, it seems to defy logic that symptoms could take months to fully develop. But further research into biochemical complexities such as neurotransmitter and mitochondrial dysfunction is likely to explain why the damage follows a cascade-like pathological effect. For these reasons, the individualized nature of the reactions, and of course the patient’s illness itself, many victims surely never make the connection.

Of course disabling adverse reactions don’t happen to everyone who takes fluoroquinolones, but I still believe, as the author of the quote above does, that adverse reactions to fluoroquinolones are far less “rare” than pharma proponents would like us to believe, and that they are connected to many of the “mysterious” diseases of modernity for many.

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My encounter with the guy in the seminar also made me think that there are a lot more recovered “floxies” out there than most of us realize. In a comment on her story, Ruth noted:

My neighbor got floxed two months after I did. She made a 100% recovery. We had similar issues, but I was slightly worse than her. Until she talked to me she had no idea what had happened to her.

The music director for the parochial school/church where I worked two years ago got floxed, made an almost 100% recovery. She had some issues with her knee, having had a complete rupture of a tendon there and she is not young. But everything else resolved.

One of the pharmacy techs where I got the Cipro is a Floxie. She was very kind to me when I came there after my reaction. She was not there the day I picked up my prescription or maybe she would have warned me. She is 100% recovered.

My mother also knows someone who made a 100% recovery after a very bad reaction to a quinolone.

I don’t think that fluoroquinolone adverse reactions are rare, and I don’t think that recovery is rare. I also know that not everyone who gets hurt by fluoroquinolones recovers, and that there are many, too many, people who are permanently injured by Cipro, Levaquin, Avelox, Floxin, and their generic equivalents. Permanent injury, and Fluoroquinolone Associated Disability (FQAD), are not near as “rare” as they should be. None of the damage done by flurooquinolones is as rare as it should be. Too many people are getting hurt by these dangerous drugs. Even if many of them recover, poisoning people with dangerous and consequential drugs, when there are safer alternatives available, is wrong, and I hope that it stops soon.

 

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12 thoughts on “Neither Fluoroquinolone Toxicity, nor Recovery, are Rare

  1. tammyrenzi December 16, 2016 at 8:31 am Reply

    Like the man you talked with, I am ten years out. Wait! Actually January will be my “11th year anniversary.” I think many of us have, once we started talking about it, found others who have suffered from FQs. Of the handful I’ve met personally (or through conversations, “My cousin had that….”), all of them have recovered. Even one 80 year old first grade teacher I worked with (yes, 80!) who couldn’t walk off the plane to meet her family and had to be taken in a wheelchair, recovered. That said, I know now all people do. But I’m living proof that people do heal and get back to activities they enjoy. Or, maybe like me, they start activities they “should” have been doing before – like exercise. I am much more active now than I was back in 2006. I appreciate each moment much more. I’m not rushing on to the next thing, the next rung in climbing the ladder. Life is beautiful and I wish that for each and every person who is suffering now. Time has a way of opening up new opportunities. When it’s really bad at the beginning, hold on. Find the best ways to cope, and give it time. Eleven years has passed so quickly, and I am so glad I didn’t wish it away.
    Healing and love to all.

  2. cindy Jones December 16, 2016 at 8:47 am Reply

    Thanks for these stories. I am in a bad way and need a lot of support.

  3. Gil December 16, 2016 at 12:48 pm Reply

    I personally know a handful of people who have been harmed by fluoroquinolones. They have all recovered. It took some time but they recovered. I am 19 months out and I am mostly recovered with a few set backs along the way. I don’t quite have the energy I used to, and I have to watch what I eat, and not overdo, but I am able to live a mostly normal life. I don’t drink any more, I eat well, get plenty of rest, and I will for the foreseeable future maintain a magnesium protocol. Time, a consistent good night sleep, a clean diet, and magnesium were the most important elements of recovery for me.

  4. Ray December 16, 2016 at 1:56 pm Reply

    Hi Lisa,
    Thanks very much for this piece. I posted on Floxiehope from the UK only a couple of times after my mild cipro ADRs started in summer 2015, but I wanted to add my voice to yours on this topic.
    I seem to be an example of someone who has had the “warning signs” that further FQs could result in serious problems. Mild though my reaction has been, it WAS real and easy to distinguish from ageing, wear-n-tear and other natural causes. I researched early on and may have avoided worse problems by so doing, but I can’t be sure.
    I could have put my peripheral neuropathy and musculoskeletal symptoms down to the start of ageing (I’m 61), the fallout from stress, etc, and not made the connection. I suspect that the majority of those who have been mildly affected haven’t made that connection and are off the radar. They’ll carry on with their lives and their tolerable symptoms will fade…until the next course of FQs or until they take NSAIDs or steroids.
    I periodically send in ADR reports/updates to the MHRA (the UK’s FDA) to stay on the radar in my small way and they are copied to my GP. I belong to a UK support group and I will stick with them and help them even if I recover “110%”, because this outrageous medical scandal must not be buried just because the majority may be only grazed by the FQ bullet and don’t realise it.
    Just FYI, I’m 19 months out from cipro and I get on with life normally, but I do have souvenirs of my brush with it. I’m not in constant pain but I have episodes of tolerable but uncomfortable myalgia for a couple of days after resistance exercise. The neuro-stabs, tingles and twitches are infrequent now, but they occasionally flare up for a while. I have tolerable but persistent tinnitus like chirping crickets. It’s supposed to be one of the most stubborn symptoms to fade, if at all. I’ll feel more secure about my progress at 24 months if I’m at least like I am now.

    Very best wishes,
    Ray

  5. Barbara Arnold December 16, 2016 at 1:59 pm Reply

    Lisa,
    Just goes to show about fluroquinolone toxicity being rare. Like you out of the blue while on vacation I met a girl who had also been floxed. She did not know until I told her after hearing her symptoms and that she was given Cipro . She told me the Doctors thought she was imagining everything. She is now looking on floxie hope.
    I also met three Doctors on the same vacation ( I’m still on vacation at the moment) who I told my storie to. I got a lot of long silences and blank stares hey what do I know ?
    I tell everyone I can, and many people take the time to write the information down.
    Trouble is everyone I see that looks slightly disabled I think “hmm” are they floxed .

    • Madge hirsch December 17, 2016 at 4:09 am Reply

      Know what you mean! After I found out about floxing and the myriad symptoms it hit me that my mother had probably been floxed – to death. She suffered from RA and COPD and every winter was given at least one course of antibiotics for the aggravation of the latter. It was only when I came across accounts of floxies losing the “padding” on the soles of their feet that the penny dropped. For years my Mum had been complaining that she had no padding and it was like walking on her bones.

  6. Ray December 16, 2016 at 2:07 pm Reply

    Ah, there’s just one more symptom I forgot to mention!
    I click and crack a bit and it kind of comes and goes. It’s not painful and I think it’s from the ligaments, not the joints themselves. Perhaps I’ve got some cartilage erosion, but I don’t seize up or have any grating going on…..yet 😉

    • tammyrenzi December 16, 2016 at 2:58 pm Reply

      Hi Ray, I click and crack too, even almost 11 years out – but it’s infrequent and tolerable. I’m still able to do all of my activities; I just rest a bit more on those days. I hope you find that yours goes away completely or just lingers from time to time like mine. It was much better 18 months to 2 years out.

  7. Bob December 16, 2016 at 7:42 pm Reply

    You are absolutely right Lisa. I have talked half a dozen people at least who realized they had been hurt by these poisons after I talked to them. I believe I have been hurt worse than most with central nervous system problems as well as peripheral neuropathy that makes walking a terrible experience. I am now almost back at square one in a relapse. It seems like very little progress in 3 & 1/2 years and I am very tired of the pain. I would like to believe I will eventually recover but it seems more and more unlikely. The nerves don’t seem to heal fast if at all. I.wish I heard more stories of those with severe nerve issues recovering.

  8. Susan December 16, 2016 at 8:24 pm Reply

    I was in church one Sunday last month and I greeted the guy behind me. He was apologizing for his groaning. He said that he had been damaged by Cipro and was in pain. I told him about floxies. I am also beginning to believe that floxing simply is not rare anymore.

  9. john wheland December 16, 2016 at 10:45 pm Reply

    I am 2 years out and am mostly back to normal. Muscle strength and energy are still lacking some but I am able to do most anything I want to. Other symptoms pop back up occasionally but are generally mild and short lived. My split Achilles tendon is completely healed. I tell my story to anybody that will listen and have prevented some people from taking this devil drug. There is hope.

  10. Jeremi March 9, 2017 at 11:37 am Reply

    Beautiful post, gives so much hope!

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