NEW FDA WARNING for Cipro, Levaquin, Avelox-Permanent Peripheral Neuropathy- Mixed Emotions

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The FDA announced on August 15, 2013, that fluoroquinolone drugs such as Levaquin, Cipro and Avelox will be required to change packaging inserts to contain a warning for severe, permanent and disabling peripheral neuropathy. The FDA states that the damage may occur very soon into the administration of the drugs and the damage may be permanent.

If you as the reader, are not familiar with exactly what peripheral neuropathy is, here is the FDA’s description: Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped or be permanent. Permanent. Yes, forever. Never going to stop burning for the remainder of your life. It’s the feeling of spontaneous human combustion with out all the nasty fire and flames. Holy cow. How is this even acceptable?

I have very mixed emotions about the FDA’s announcement today. As a victim of Fluoroquinolone Toxicity and peripheral neuropathy, I am caught between being pleased and being angry. Very, very angry. Most victims, and I know thousands of them, will tell you that they told their doctor about their peripheral neuropathy as well as their other grocery list of horrific symptoms and doctors simply smirked and informed them “These drugs don’t cause that”. Patients were then recommended an anxiety drug, psychotropic drug or asked if someone at home was abusing them. I wonder where doctors get their information regarding drugs that they throw out like beads at a Mardi Gras parade? Some physicians are completely unaware of the Black Box warning placed on fluoroquinolones in 2008 for tendon tears and those who know about it never ask the tendon tear victim “Did you take a quinolone?”. Victims who themselves have become aware of fluoroquinolones and their resulting tears (God bless the internet) have informed their doctors. Not many victims report that their doctor informed THEM that they had a tear as a result/side effect of the drug. Doctors are in denial and they are in deep. There is also money. Yes sireeeee! Good old money. It’s always found where shady deals are done and pacts are made with the Devil. If you don’t believe me Google Dollars for Doctors, put in your physicians name and magically (God bless the internet, again), you are informed as to how much he/she made from drug companies this last year. You also get too see which drug companies are lining the pockets of the people we entrust with our lives to. It’s business. BIG business, so don’t kid yourself for a moment that it’s not.

My next thought is the FDA is covering it’s hiney and trying to cover it fast. Victims are becoming more and more vocal, gathering in groups on Facebook (God bless the internet, again), having Floxie meet ups, organizing in an underground network. If you as the reader are not familiar with the term “Floxie”, it is a darling colloquialism fashioned by author Stephen Freid in his best selling book Bitter Pills-Inside the Hazardous World of Legal Drugs . The term has probably stuck because” Floxie” is much cuter than “disabled” or “eternally suffering human being”. Websites devoted entirely to flouorquinolone victims abound. Google Cipro is Poison or Death by Levaquin or even just the drug names and you will get more than you can wrap your head around. These groups have initiated petitions, organized a lawsuit registry for a potential lawsuit and last May, marched on the Washington Capitol and met with legislators proclaiming the dangers and devastating side effects of these drugs. Victims will no longer take this sitting down. They are no longer being strong armed into believing they are the one in a million, the 1% or just genetically inferior. Lets not forget Medwatch, the FDA’s reporting system. Floxies are reporting in massive numbers and re-reporting each year that they are symptomatic from the drug. (To file a report go to www.accessdata.fda.gov/scripts/medwatch/). There is a lot of boat rocking going on in the Flox world these days and I think the FDA is feeling it.

The warning also states that this is only for injections or oral doses. Many victims report the same symptoms of fluorquinolone toxicity by IV and eye drops and the symptoms are exactly the same. My own mother was floxed with Zymaxid eye drops for cataract surgery. Zymaxid is the eye drop form of Gatifloxacin which was banned by the FDA in 2006 for severe hepatic failure as a result of the drug. It’s poison orally but go ahead and drop it in your eyes and it’s fine. HUH??? The reality is the results are the same. Children are also given these drops for pink eye and ear infections with regularity. The results are the same but young children are not fully capable of communicating their symptoms so many of the symptoms are unnoticed, blamed on behavior or the illness for which the drugs were prescribed. With the ear drops, the busted ear drum is the only obvious tell tale sign of a child’s severe reaction.

I tend to write very tongue -in-cheek when I write about these drugs. The reality is pretty horrific and terrifying. The day in and day out suffering of Fluoroquinolone Victims should be recognized by doctors, family members, husbands, wives, partners and society as a whole and yes, the FDA. So is a warning on packaging for drugs that steal lives seems almost trivial and somewhat of an insult. It also feels like redemption for victims that have been called crazy by family members or hypochondriac by doctors. I have mixed emotions. It’s a win but it feels like a “gimme”. Like the FDA is tossing a bread crumb and ignoring all the other disabling effects of these drugs. My only hope is that doctors will no longer use these drugs on high risk patients with known chronic diseases like diabetes, Crohns, ulcerative colitis and Lyme.

It looks like a win but it feels like a loss. One thing I do know it that it not GAME OVER. Not by any measure.

Find help here: Fluoroquinolone Victims Advocacy Network – sign the petition for a BLACK BOX WARNING for peripheral neuropathy.

Read victims stories here https://www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463

Support groups: https://www.facebook.com/groups/46690244194/

https://www.facebook.com/groups/191063714251094/

https://www.facebook.com/groups/261231253984443/

About me, the author. My name is Erin Wilson and I am an advocate and peer counselor for victims of fluoroquinolone toxicity. A two time victim of Levaquin, I have lived it and seen it all. I now counsel victims in recovery and make the public aware of the devastating effects of these drugs. If you have been harmed by Cipro, Levaquin or Avelox or any fluoroquinolone drugs, there is help. Please visit http://fluoroquinolonevictimsadvocacynetwork.webs.com/. There is support and help for recovery.

25 thoughts on “NEW FDA WARNING for Cipro, Levaquin, Avelox-Permanent Peripheral Neuropathy- Mixed Emotions

  1. Debbie Thompson

    I have mixed emotions on this, as well. Levaquin helped me. I already was suffering for many years, with neuropathy, and many other really bad symptoms, from undiagnosed/untreated Lyme Disease and Rocky Mountain Spotted Fever, way before I was ever diagnosed or treated with antibiotics. Levaquin did make the muscle, joint, and bone pain worse, while I was taking it, but went back to the regular pain, after I stopped taking it. It did, though, get rid of a horrible pneumonia type cough that I'd had for many years, and also cleared up my skin, like nothing else I'd been given. Maybe I was lucky, or maybe it's a case of one man's poison is another man's cure. (Another example would be Rocephin – many people are helped by that antibiotic, but it was poison for me.) I am very sorry for the people who were hurt by Levaquin and other medicines in that family of antibiotics. I would hate to see it taken off the market completely, though, because it does help others.

  2. Free People

    I knew there was something wrong with Levaquin and will now look into the lawsuits. Never been a 'lawsuit hungry' person but Big Pharma deserves every single lawsuit they're charged with, for every poison they throw out (which is all of their garbage).
    They can well afford the laswuits too, so I don't feel one bit sorry for them.
    Thanks for this great Blog and I will be spreading it far and wide.

  3. blakmira

    I especially enjoyed the line "one man's poison is another man's cure." You got that right — this crap is poison. And when has Big Pharma ever "cured" anything?

    Since you love this toxic junk so much, have you tried the arsenic? They're using that to "treat" leukemia. Or how about rat poison? Big Pharma uses that for "blood thinning." And how about some good old Thalidomide? You remember — it caused babies to be born without limbs in the 1960s. Hey, it's got a new patent & it's back out on the market — being used to "treat" [notice I never say cure] AIDS and cancer. That's beyond sick.

    You just can't make this stuff up.

    Just curious — do you write your comments from a script & how much do you get paid?

    1. Debbie Thompson

      Not getting paid at all, just a person who has horrible infections that were undiagnosed for many years, that I almost died from. And I agree with you that most Big Pharma drugs are poison. But antibiotics do help alot of people with nasty infections. (I never say cure, either) Have a nice day.

      1. Debbie Thompson

        Also, any suggestions you may have, would be appreciated, because, as of now, millions worldwide, are suffering from these inections, because people aren't able to get diagnosed early, and most are shipped off to the shrinks, instead.

  4. blakmira

    "for as long as you are alive" — oh the absurdity of that statement, you stupid troll. You're too stupid to even change the name on your spam comments….

  5. Erin Spangler Wilson

    Peddling your MLM crap to sick people is evil. You need some prayers to regain your soul.

  6. jazzfeed

    "hard to get" Yes, like DESTROYED to eliminate the possibility of a human ever ingesting this synthetic molecule or its variations again.

    I lucked out. I was prescribed Cipro about 13 years ago but for nothing – "precautionary" the MD said, because of an unknown rash on my leg that COULD have been a fungus or something that cipro allegedly might help. It turned out that it wasn't a fungus OR ANYTHING THAT Cipro COULD HELP, but I had no idea then. I went to the pharmacy with the prescription and while I was waiting for it to be filled I noticed a PDR in the book rack so I looked it up. When I saw something like "deteriorates tendons" buried in a list of hundreds, of side effects in tiny print I naively asked the pharmacist, "Did you read this?" I'm a piano player – tendon rupture isn't exactly what I was looking for. I got a silent blank stare which felt very creepy. It took me about 5 seconds to break the silence and say "Cancel that prescription please" and leave. It was YEARS later that I read about this, and even that was long before this article.

    Thirteen freaking years later: "NEW FDA WARNING"
    THIRTEEN YEARS, at least, since these major, DIRECT, ravaging effects were known and listed in the PDR.

    The phrase "side effect" is an oxymoron that was fabricated for low information patients to direct them to concentrate on the promised benefits. IMO, if one is considering a Rx drug, do not infer that the term "side effect" means minor even though that is the unstated implication; it has nothing to do with a major-minor parameter, as this example illustrates.

  7. laurabMT

    The beginning of health problems that have plagued me for the last 6 years began when I took cipro and 800mg/day of ibuprofen during a 3 day hike in high elevation. Took cipro for a sinus infection (the only antibiotic I had) and the ibuprofen to ward off knee issues that I was afraid would halt my hike. My gut was trashed, I had fatigue and energy issues that would not quit, and neuro-degenerative issues that are getting worse, even as I have improved my gut and adrenal problems. Never blindly assume that drugs that are freely given are without dangers…..wish I had known.

    1. Patricia Braun

      I feel for you,I had a bad infections during chemo and was put on cipro first 1,000 mg a day and had knee pain so bad i was in tears for 1 month then the Dr. put me on levaquinn 1,000 mg a day i told him it felt like i was hit with a steel bat so another month passed he refused to take me off it untill i walked out my front door and fell down my apt stairs.I no longer have the use of my right leg and am on SSI.then after my fall he put me on 1,000 mg amox and the pain got a little better,then watching tv one night i saw the commercial for the lawsuit didnt know about a black box waring.Im still trying to find a lawyer.I tore my shoulder muscle and damaged my knee for life.

  8. Amira Al Amin

    So many people took Cipro for months when they were exposed to Anthrax….I wonder how they are all doing now? What a shame it is when you cant even rely on the FDA.

    1. maureen

      Three days after I started taking Cipro and feeling strangeness in my gut, I told another Dr. I was taking this prescription and he turned white and told me "Stop taking this drug immediately, I've seen too many awful cases from this drug"….And then, right after, there was the anthrax scare and several months later I read that Cipro was the drug for that, I got so angry. We were the guinea pigs for this drug and I believe it was all planned out for the Anthrax attack, just like they create a vaccine and then bring on the problem to vaccinate. I also wonder how these thousands of people are coping with their lives!

  9. Jessica Williams

    Interesting information, that I will most definitely remember next time any Dr. tries to put me on this for another bladder or kidney infection, thankfully I don't think I've had issues with the symptoms/problems you're talking about, but the one I ALWAYS get on Cipro is very vivid and horrific nightmares. That alone made me hate the drug, but this gives me more reason to never want to be on it again. Thank you for the information.

  10. carolann

    I agree that patients need to become informed and advocate for their own health. Children and the extremely I'll need someone they can trust to advocate for them. Since we all have the internet at our fingertips (the public library has free internet available to all ) it is much easier to investigate health issues, pharmaceuticals as well as natural cures. I do think that drugs like ciprofloxacin and levaquin have their place just not for things like earaches and the like. These strong and more dangerous drugs need to be reserved for life threatening as well as life impacting illnesses. I speak from experience, I had an infection in the sinus hidden between the eyes just behind the top of the nose. It was a fungus hanging in a hard bag growing (gross to even imagine) it was killing me, I am young but was told that if I was 70 I would of been dead from it. Levaquin and a steroid saved my life, I am grateful. I am aware and was aware that I could of become anorexic from levaquin as well as developed neuropathy but I was going to die, so it was a chance I was willing to take. I am fine now , but I took a probiotic and an enzyme as well as a complete liquid vitamin during and after treatment. We need better educated doctors, who really understand the human body and nutrition and stress. The doctors are not being properly educated in medical school. It is up to us to educate them and to educate our families. We are worth getting this right, don't give up. Proper nutrition and stress management (through nutrition and sleep and time off ) is everything

  11. diane ross

    well i am here to tell you this is the very worst thing i have ever experienced in my life. i got neurpthy from it. let me tell you i have had all kind of things wrong with me in my life but this talkes eveything to a different level. to start with the pain come shooting in my feel and jerks them with no notice . its like someone took very sharp knitting needles and shoved then either between my toes or threw my feet all the way threw. then there are times it starts around six pm when it feels like dogs are chewing on three of my toes. both feet.. they feel also frost bit. i use to like to take a warm bath but the wather is so painful on my feet. no more hot tubs, no more swimming. it feels like every pour opens up the size of i do not know just huge and burning on fire. the pain is so sever it feel at times like a electric circular saw is taking my feet off. i scream. my husband has had to go to a upper bedroom he can not see me in this amount of pain. pain meds do not touch it as its nerve pain. i take cesure meds they help some. i have a cream its 180 a bottel it last a month its three different kids of meds. the pain goes in my noes like chinsee tourture. i have it some in my hand and finger its spreeding but not as bad yet. i loose my balance trip and totally fall. i can not hold my grand babies. oh it affects you private parts yes i have atrophy you can not feel any thing becaue you are dead . not good when your husband is only 45, i have had cancer, back surgey, ruptured dis in nec and bac two each they can not due surgery on . blew out my knees, carpel tunned both wirist , and broke my nose. rumatic feaver, nearly died from illiutis, sinus infection, fibromiligia, arthrutis, and nothing and all of these things tog do not come close to this… i beg you donot take it. you will want to die. i talked to a woman it all the way up her legs. i know people its in their man parts they do not work. oh standing for more than a few min is impossible. wheel chair is inevetalbe and a life of deterotiation is your fucture.,…. this should not be on the market… shame on the fda

    1. jlapisjulia

      I have periferal neuropathy in my entire body now for many years.. have taken Cipro, Cymbalta, Levequin, Nortryptalene and Tramadol.. I am not allergic( itiching all night, nausea, hot, cold,depression etc). Allergic now to lyrica, neurontin, all most if not all opiods.. had some back surgery to try to help my neuropahty in my legs, but the only drug I could take in hospital was torodol and u can't take it very long.

  12. Nancy Brown

    My husband started experiencing peripheral neuropathy after taking Pacerone for Atrial Fibrillation several years ago. He suspected the drug was the cause, but his cardiologist insisted it wasn't – for a year and then said, Pacerone was most likely the cause. At this time, he is diagnosed with Idiopathic Peripheral Neuropathy, meaning the cause is unknown. The drug was stopped, but the neuropathy is still present…

  13. Maureenm

    I believe in only taking medication that has been on the market at least 15 years or more. Better yet, don't use pharma. Who can trust it?

  14. Reginald Reese

    Vigamox is the one that damn near killed me. I believe I am going to life destroying problems for the rest of my life. If they took this shit off the market it would put a big dent into cataract surgeries. There are tons of cautions against using it on people over 60. 60+ are the largest group getting cataract surgery. Another one is corticosteroids. They are bad shit too!

  15. SANDY T

    I took levaquin (generic) in December 2013 for a strep infection. Oh what pain I had in my left thigh and knee fore the entire 10 days of the therapy and weeks there after. I had read what the info. sheet gave, but I never thought of HOW MUCH PAIN there would be and how long it remained. And last night (1.25 years later)- I had some pain in my thigh which reminded me of that experience. My intestinal flora was GONE. Still trying to get it back to previous "poison" status. I told the Dr and she said not to take again. DUH! Now when I go to an intake- I tell the DR. and Nurse to not bother prescribe me anything- I WILL NOT TAKE IT- PERIOD.

  16. jlapisjulia

    what is everyone taking for pain from neuropathy? I am now allergic to most every single drug, severe itching, suicidal, nausea, etc.

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