There are people who should know about the dangers of fluoroquinolone antibiotics.
The FDA should know about the dangers of all the drugs on the market. There should be people at the FDA who have read the 200+ articles I have HERE about the damage that fluoroquinolones do to cells. And there should be people at the FDA who track adverse drug reactions and therefore realize that adverse reactions to fluoroquinolones involve multi-system, often chronic, illness and disability. There should be people at the FDA who realize that a 43 page warning label for Cipro/ciprofloxacin is an indication that it’s a dangerous drug, and there should be people at the FDA who push for restrictions on drugs that carry black-box warnings–the most severe warnings possible before a drug is removed from the market. It’s the JOB of the FDA to regulate drugs and to protect the public from drugs whose benefits don’t outweigh their risks. The powers-that-be at the FDA should be working toward more prudent and appropriate use of fluoroquinolones, because it’s their job (and duty, and mission, and moral obligation) to do so.
Doctors should know about the dangers of fluoroquinolones because they prescribe them, and it’s not too much to ask that doctors know the side-effects of the drugs they prescribe. We, as patients, also ask that our doctors recognize adverse drug reactions when they see them. It would be even nicer if they could cure us and reverse adverse drug reactions, but maybe that’s asking too much. Some knowledge about the dangers of the drugs they prescribe isn’t too much to ask for though.
Pharmacists should realize that fluoroquinolones are dangerous drugs. They study drugs much more extensively than doctors do, and they’re the last line of defense before a patient receives a prescription, so it’s expected that they should know about the risks associated with all the drugs they dispense.
It is expected that all of these people will not only know about the dangers of the drugs they regulate, prescribe or dispense, but also that they will protect patients/consumers from using them inappropriately and getting hurt by them unnecessarily.
I don’t think that it’s too much to expect, and I think that some anger at the FDA, doctors and pharmacists is appropriate given their collective failure to minimize the damage done by fluoroquinolones.
There’s a problem with these assertions though. Even though the FDA, doctors and pharmacists SHOULD know about the dangers of fluoroquinolones and about fluoroquinolone toxicity, I don’t think they do.
I don’t think that they actually realize the severity of adverse reactions to fluoroquinolones. I don’t think that they realize that people who were previously healthy can have all aspects of their health and lives ruined by Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, or any of the other fluoroquinolones.
It is too bizarre, and too unheard of, that a class of ANTIBIOTICS could cause multi-symptom, chronic, disabling illness. Fluoroquinolones are antibiotics, and even though medical professionals and regulators should know better, many believe all antibiotics are benign drugs.
As frustrating as it is for those of us who know first-hand how terrifying and destructive fluoroquinolone toxicity is, I think that it will behove us to recognize that, unfortunately, most doctors, pharmacists and even FDA personnel, don’t realize how dangerous fluoroquinolones are, or how devastating fluoroquinolone toxicity is to its victims.
I know of several physicians, pharmacists and scientists who have been “floxed.” They were just as blind-sided by their adverse reaction as anyone else. They didn’t know how severe and life-altering the effects of fluoroquinolones could be until they were personally affected by them.
It can be difficult for those who have experienced fluoroquinolone toxicity to recognize, but many medical personnel truly didn’t know about fluoroquinolone toxicity. Doctors and pharmacists weren’t taught about fluoroquinolone toxicity in medical or pharmacy school, and the reactions are bizarre enough that they’re difficult to recognize in practice, so they don’t see it until it happens to them.
Unfortunately, I don’t think that the people at the FDA know either.
While listening to the FDA’s Antimicrobial Drugs Advisory Committee at the November 5, 2015 meeting to, “discuss the risks and benefits of the systemic fluoroquinolone antibacterial drugs for the treatment of acute bacterial sinusitis, acute bacterial exacerbation of chronic bronchitis in patients who have chronic obstructive pulmonary disease, and uncomplicated urinary tract infections in the context of available safety information and the treatment effect of antibacterial drugs in these clinical conditions,” I got the distinct feeling that the FDA committee members didn’t realize the extent of the damage that fluoroquinolones do. Even though their meeting brief noted that fluoroquinolones can cause disability, the committee members still seemed surprised by the severity of the adverse reactions described by victims of fluoroquinolones.
Though they seemed to hear those who testified, and they listened respectfully, I think that stories such as the following were a surprise to the committee members:
B.C (Before Cipro): I was a hiker, biker (rode my bicycle across the US carrying 50 pounds), hockey player, horseback rider, swimmer; thin, fit, worked in moderately physically demanding profession, no known health issues other than a simple UTI.
A.C: (After Cipro): Five days and 10 pills later: crippled with unrelenting pain, unable to walk, sit, stand, use arms, fingers, or type due to severe body-wide tendon pain; hallucinations, tinnitus; central, autonomic, and peripheral neurological issues; severe neuromuscular damage; vision and hearing issues; severe endocrine abnormalities (glucose, thyroid); severe cardiac issues; autoimmune issues.
A.C. Permanently : Five years later: Still suffering and disabled; can’t work, lost profession, lost financial security, lost marriage, lost hope for any reasonable quality of life. Denied by medical profession due to no known diagnostic biomarkers; denied legal recourse due to generic; denied SSDI due to the first two and denial by the FDA and everyone involved, and ultimately, will be denied as the most probable cause of my death.
I don’t think that the FDA committee members were aware that fluoroquinolones could do that much damage. How could an antibiotic do that much damage? It’s unheard of, but it’s still true–fluoroquinolones can, and do, an immense amount of harm.
The FDA’s Antimicrobial Drugs Advisory Committee now knows about the harm that fluoroquinolones inflict. They sat through our testimony and they can no longer claim ignorance. They were told, in no uncertain terms, about the devastation that fluoroquinolones have brought to people’s lives. They acknowledged that the warning labels currently on fluoroquinolones do not appropriately convey the risks involved with taking these dangerous drugs to treat simple infections.
The FDA needs to convey to doctors, pharmacists, and the public, that fluoroquinolones are dangerous drugs with severe side-effects, and that it’s not appropriate to use them for treatment of simple infections. If the FDA updates the warning labels on fluoroquinolones to note that fluoroquinolone associated disability is a possible effect, maybe more doctors and pharmacists will recognize that they should not only avoid these drugs themselves, but that they should avoid them for use in patients too.
We, as victims of fluoroquinolones and patient advocates, are screaming loudly about the devastating effects of fluoroquinolones. There have been hundreds of news stories over the last year about the dangers of fluoroquinolones. The November 5th FDA committee hearing was a resounding success. The term “flox” is becoming recognized, and people who have not been “floxed” themselves are recognizing what it means when someone says, “I am bed-bound and I lost my job because I got floxed.” The word is getting out and those doctors and pharmacists who are paying attention are recognizing that fluoroquinolones are consequential drugs. At some point we will be able to say, “you should have known” when confronting a doctor or pharmacist about a fluoroquinolone toxicity reaction. Right now though, many doctors, pharmacists and even FDA personnel, don’t know how horrible fluoroquinolone toxicity reactions can be.
Our “bottom-up” efforts are making a difference, but some “top-down” efforts are sorely needed too. The FDA must thoroughly communicate the dangers of fluoroquinolones to doctors, pharmacists and patients.
Ignorance is not bliss when millions of fluoroquinolone prescriptions are being handed out, and thousands of people are being devastated by these dangerous drugs. Everyone involved in the medical system, including patients, needs to be informed about the dangers of these drugs. Currently, they are not. Currently, they don’t know about fluoroquinolone toxicity. Change is coming though. The more patients are listened to, the faster change will come.
Dear Lisa I have fwd this onto our local director of public Health. It is time to expose this scandal big time now. I have had a terrible afternoon with neuropathic pain and I never thought I would ever say this about anyone but I feel so angry so bitter that I hope that one f the people responsible for this suffer at least one week in the same way that I have been suffering for coming on for two years now. Kind regards JEAN Tue, 24 Nov 2015 19:05:01 +0000 To: jean_hooper95@msn.com
While I don’t think everyone at the FDA knows, and certainly not subcommittees such as this one, I do think SOME at the FDA know, and yet continue to allow the drugs to be used as they are. These are the people that need to be held accountable. I agree most doctors do not know, not pharmacies, which is absurd. They are the ones charged with guiding our healthcare. I spoke to yet another doctor yesterday (not being treated for anything) and her reaction was the same as the others. “I always use Cipro. Have some in my cabinet right now. You suffered a RARE occurrence …and NO, Cipro is NOT a chemo drug.”
Thank you, LIsa, for taking the time to support us and keep us informed. I am sick of my co-workers telling me that I should quit work before I get fired, and file for disability. They don’t understand that there is no diagnosis for being ‘floxed’ in the SSI determinations. It’s like they think I can just walk down to Walmart and buy my disability check. They don’t understand that I have been robbed of my life.
Lisa Thanks for this. I replied to you but was wondering if there is anything I can be doing to educate people as to the dangers of this despicable drug. I feel that what has happened to me has happened for a reason and that perhaps it is to pass on my experiences as terrible as they are of this drug to help others. Do you think that is a crazy way of looking at things. I am mindful today of the day when this started I also had a spasm /pain in my left upper chest , I have it now. When will this nightmare cease Lisa? We all ask that question don’t we? I think Floxie Hope is marvellous Date: Tue, 24 Nov 2015 19:05:01 +0000 To: jean_hooper95@msn.com
Lisa..thanks for having a FB site to go to…it really has helped a lot of people..I thought I was crazy…now I know better…..
Quote, “The FDA’s Antimicrobial Drugs Advisory Committee now knows about the harm that fluoroquinolones inflict.”
You are far FAR too kind here about the so called past ignorance of the FDA. Doctor’s & Pharmacists probably in most cases they don’t know, the FDA though, knew DECADES ago!
The drug companies always knew, and the FDA knew practically from the beginning too, look at all the past Quins that have been pulled off the market, and then the 10’s of thousands of complaints that have been filed through Medwatch and otherwise over decades, no way they think those reports are sent in for “fun”, those were severely damaged people over and over again sending in reports telling them so (sent one myself), falling on deaf ears, “Oh they are the minority, its a rare occurrence, next issue……”
The screaming and bad press just has to get loud enough to put enough pressure on them to outweigh the obvious pay-offs they get by allowing these to stay on the market. That might sound all tin-foil hat and conspiracy theory like etc but this is exactly what is happening in ALL Industries where Billions are involved (like the confirmed corruption in stock market, where some have actually been prosecuted). In many cases there is NO other explanation either for how these kinds of corruptive practices can be allowed, just like GMO’s for another good example, poison directly inside the food, Fluoride poison put directly in the water, these are VERIFIED poisons just like Cipro is, then someone tell me payoffs aren’t happening to make and let these things happen, no way, its been this way for a long long longggggg time and is unlikely to change anytime soon I’m afraid.
Lisa you are right about most Dr.’s and pharmacist not knowing the REAL adverse drug reaction’s of this class of medication. I did not know until I was floxed. I didn’t know until my health was wrecked beyond repair.
Allow me to give a pharmacist’s perspective on this. Dr.’s and pharmacists rely on information from the drug company and the FDA. Yes we also read studies and articles but we can’t be expected to read every article and study ever published. We rely on and trust the FDA. It’s their job to take reports of drug reactions and save this data to show trends and investigate these reactions IT’S THEIR JOB. We use the information they give us.
When I was a retail pharmacist (prior to the 2008 black box update), I dispensed A TON of Avelox, levaquin and Cipro without ONE reported complaint from any of our customers. I knew that these meds could cause arrythmias and tendon ruptures in very rare cases. I warned my customers of this. I thought the med was generally safe because of no reports of adverse reactions and the FDA would warn us with a black box warning or remove it from the market if it was a dangerous drug.
Sometimes it can be hard for even health care professionals to determine what drugs are really and truly harmful. The fact is that most drugs have the potential to be somewhat harmful. Most drugs have extensive warnings in the package inserts. For example the link below is a package insert for Aspirin.
http://www.fda.gov/ohrms/dockets/ac/03/briefing/4012B1_03_Appd%201-Professional%20Labeling.pdf
Aspirin is over the counter and chances are most of us have all had aspirin even though if you look at the adverse reaction section of the FDA approved information you might be scared to death to take it, but most of us will agree that aspirin is generally safe. Most of these reactions are extremely rare. (Most adverse reactions to drugs are also transient and stop after you finish the med.)
Most of these possible effects are just thrown in there in a list. I personally think that the FDA needs to overhaul the package insert warnings and precautions section to give a more accurate picture of what type of reactions are common and severe by giving a more extensive descriptions. For example tendonitis and tendonosis in the Cipro package insert does not do it justice whatsoever. What a joke. I don’t have to tell you floxies how incredibly misleading this description is for health care professionals. Prior to 2008 tendonitis and tendonosis weren’t even in the black box. They were just thrown in there with the rest of the possible adverse effects. Even in the black boxed warning it doesn’t describe the chronic and sometimes progressive nature of the body wide connective tissue destruction that Cipro causes. Also for some of the reactions they need to give the likelihood of occurrence. For example, currently a few of the package inserts (package inserts are another name for FDA approved manufacturers drug information) give percentages along with the reaction which is incredibly helpful.
Dr.s and pharmacists are used to knowing that ALL drugs have these scary package inserts and warnings that are generally vague with a hundred possible reactions. We generally know what kind of reactions are typical of certain medications. Most Dr.’s and pharmacists think that fluoroquinolones are safe. Why? Because most of us likely have never ran into a patient or especially multiple patients with fluoroquinolone toxicity. If a Dr. were to repeatedly get patients complaining of the same side effects from the same drug class they would most likely make the undeniable connection and admit that there is probably an issue with the drug. The chances of a Dr. having multiple floxies are rare. If only we had an agency that would capture reports of these not so common but devastating side effects that can happen with certain drugs and compile and investigate these reports to establish a correlation and inform prescribers and the public….. wait … oh yeah… the FDA is supposed to do that.
Dr.’s are not working for the drug companies. Dr.s are not trying to hide information from you. While they can be rightly accused of being arrogant or callous at times, I believe most generally do care about their patients and are trying to help them. I have a sister in law that is a physician and she puts in a lot of extra hours after work looking up info in the attempts to help her patients. She really, genuinely does care about her patients however when I spoke to her about floxing she was absolutely clueless about it and brushed it aside and commented that it must be extremely rare.
Why should she know about fluoroquinolone toxicity and the inconceivable damage that it causes to the human body? Nobody really knows what these drugs are doing in our body. There are a number of studies that point to possible explanations for floxing but as we all know MANY more studies need to be done on this class of medication. The FDA has not made floxing known to us Dr.’s and pharmacists until just NOW with FQAD. (The FQAD description is not even close to the hell that these drugs can cause.) Even though floxing is most likely under reported, the FDA sat on this information for years.
The FDA was the organization that was supposed to make floxing known to our health care providers. If not the FDA then WHO? The drug companies?? Hysterical. The FDA was the organization that GETS ALL OF THE REPORTS OF THE ADVERSE EFFECTS OF FLUOROQUINOLONES. The FDA should have been investigating these reactions and protecting and informing. They did not. They did not do this until the public outcry was so great that it couldn’t be ignored anymore. It’s hard to ignore all of those TV news stories right? And now the FDA wants to play hero by listening to the victims and recognizing FQAD which in my opinion is the absolute minimum they could have done given the publicity of floxing (thanks to Charles Bennett and others who worked so hard for change)
Floxing has not been in the FDA APPROVED INFORMATION about fluoroquinolones like it should be therefore Dr.’s and pharmacists most likely won’t believe a patient’s report about a collection of bizarre reactions unless that Dr. or pharmacist got many similar patient reports, and to be honest floxing is somewhat rare but DOES EXIST as we all too well unfortunately know. Again, the chances of your average physician having multiple floxies is going to be rare. Take into consideration the absolutely bizarre delayed reaction variety and the correlation is not going to be made.
See the problem? The FDA doesn’t include floxing in the package insert as a syndrome or black box warning therefore Dr.’s and pharmacists don’t think it exists. That’s why Dr.’s are more likely to believe in unicorns and sasquatch than a chronic progressive illness brought on by an antibiotic they prescribe many times a day. I wonder just how many patients report symptoms that are dismissed by physicians. The Dr. tells the patient that the Cipro didn’t cause his or her problems. The patient believes the Dr. The reaction doesn’t get reported. The FDA doesn’t get the amount of reports that it should to really represent what is going on. That’s why floxies are being diagnosed with fibromyalgia and chronic fatigue etc because the relationship to fluoroquinolones hasn’t been established. It all comes back to the FDA and to the incredibly bizarre nature of floxing.
With all of this being said, the Dr.’s that don’t recognize tendon or joint pain or some of the more typical reactions that this class is known for have no excuse. If any of you had one of these Dr.’s… get a new Dr.
I am irritated at the fact that prior to 2008 the Cipro package insert put emphasis on the rotator cuff and the achilles tears as if these were the only body parts affected and that this was the worst case scenario, along with QT prolongation. (black box warnings are usually worst possible reactions to a med). This is SO far from the truth as far as the musculoskelatal issues go. As a pharmacist I knew that tears could be an issue but I chose to take Cipro thinking that I would roll the dice, after all, the probability that this would happen to me would be so incredibly small since I had taken Levaquin in the past with no tears etc. Now I have at least 2 tears from only 2 MRI’s and I suspect many more tears. The body wide joint issues are only the tip of the iceberg. They are not even my worst symptom. I very likely looking at a lifetime of pain and dysfunction. There is no cure for this man made disease state. My health is wrecked and I regret daily the fact that I chose to take Cipro. I have beat myself up over this a lot over the years.
This may not sit well with you floxies reading this but personally I actually find solace in the fact that none of my colleagues here at the hospital I work at really know about the devastating effects of fluoroquinolones either. I can tell by the look on their face when I speak of my personal story of the horrifying, life changing, chronic and progressive effects of the Cipro I took 4 years ago that they do not believe in unicorns… I can tell they really don’t believe me. They are as clueless as I was, Dr.’s and pharmacists alike. How was I to know? Was I not responsible because I didn’t read every fluoroquinolone study on rats tendons etc?
It’s easy to have a tendency to the put blame on Dr.’s and pharmacists. It’s our job to know about medications right? What if the information isn’t out there as it should be? What if the one organization that we trust, that is RESPONSIBLE for making this information readily available to us failed to do their job? The FDA is asleep at the wheel. I used to trust this agency but now after my experience I give credence to the conspiracy theories that they really serve the drug companies and not the American people.
Now I consider myself an expert on floxing (if there is such a thing). Many floxies in general know a great deal more than Dr.’s and pharmacists. Unfortunately being an expert in floxing is a curse not a blessing and it’s only through desperation that we know so much about this still poorly understood molecule.
The information I found on floxing did not come from the FDA or the drug company. It came from personal accounts on the internet, sites designated for victims by victims, anecdotal reports like the flox report etc. Dr’s and pharmacists are not taught to get drug information off the internet from random websites like floxie hope, my quin story and facebook but unfortunately the FDA cannot be trusted to provide us with accurate and adequate information regarding these medications and they don’t seem to have any interest to truly study and investigate these drugs like they should. These floxie websites hold the richest, most dense amount information from personal accounts and links to studies and articles that we have regarding this class of antibiotic and the nightmarish effects that they have on the human body. They are the best source a Dr. or pharmacist has in regards to fluoroquinolone adverse effects but the health care community will never rely on these sites because they are not a trustworthy source of information… like the FDA.
There is something terribly wrong when American health care professional’s best source of information regarding potential devastating effects of certain medications are from websites by lay people who are victims of the FDA’s incompetence. In my opinion the current clinical trial process to determine if drugs are safe needs to be revisited. Especially phase IV of the clinical trials which involves post marketing surveillance. We could all agree that this part of the FDA’s clinical trials is clearly defunct. Apparently it is a broken system in which drug companies are not held liable for harmful reactions to their medications. Who is holding them accountable? Who is making them investigate and study their own chemicals when reports of harm arise? Who is holding them to responsible and ethical business practices if not a government agency that should be looking out for the welfare for its people?
Dr.’s and pharmacists believe that they are actually helping people. They trust the FDA. Now I’m not so sure how much we are helping people. I wonder how many people we are hurting due to reckless and irresponsible drug companies and an ineffective and possibly corrupt FDA.
The system is broken.
Reblogged this on The Life Of Von and commented:
For those of you who my not be aware…..
Thank you for telling your story. It could be my story or one of the many sufferers on this site. We try to use our collective voices to WAKE UP the FDA to the truth about FQT. It is very hard to convince those who choose not to believe.
Kim
I would like to write a book on the last say twelve years and might, if Iive to tell it. I think they new well the effects way before it was brought to us. It is like they were targeting, to damage people with unfavored DNA. I lost my job and could jump over a fence, into an eighties model Chevy truck, and be a good dad. I fished, drummed at churches, bowhunted a bit, and could do the work a man double my size. I been battling depression and a dump truck load full of dispair since way back. The thing that bothers me the most, is how my Boy doesn’t understand why dad can’t play for very long. He has lost His patients and my Wife/Daughter have been through the mill. I have to take gobs of garlic and turmeric just to get by better. It changed much about me and the way I think. Death would only hurt my Family if I were not here, and no worries, I remain. Levaquin750
X5 at least, took my body, but not my life. I believe in a Supreme maker, and that He has mercy on me and the bitter is not here. It has a place. With a life of pain all along, Family trageties, failings, and lack of sufficiency to help others, I remain selfless enough yet to remain here. Ridicule should be handed over to the ones that hurt. God Bless all here and the sufferings of this life are, as long-suffering as they may be, a blink of an eye.
$ 12.00 Canadian… a twelve dollar prescription which so far has changed my life for the past 18 months, for a possible UTI. Urine test strip.. I asked if Dr was sending me to Lab… if it hasnt gone by next week he said, as he wrote a prescription for ten x 400g NORFLOX.
He did not warn me about possible side effects. I had been his patient for twenty years and he knew of previous sensitivities to drugs and my other health issues. I was 72. The pharmacy I had used for fifteen years gave my spouse the meds and three pages of notes.. to bring home to me, but no verbal warning. They too knew of my drug sensitivities and health issues. I glanced at the first page.. but Dr and pharmacy were ok with my taking them, right?
The reaction did not hit until just over a week after finishing the pills. The only reason I checked meds on internet was they were generic, and I used to get brand name, and they melted in my mouth before I had a chance to swallow with water.
Burning, tingling, numb yet sensitive hands and feet… has never left me since although I will get a few hours of relief unexpectedly. I have strange shots of pain in legs, arms etc. and often have to lie down as feel so bad.. also very rarely go shopping etc as my feet and hands dont work right and my legs often feel like sticks. The mental stress has been almost unable to bear.
While checking Internet I noticed a certain Lot number of Norflox had been recalled one year before, and upon checking discovered the Pharmacy was currently dispensing the recalled Lot but would not or could not tell me if the pills I received were from the recalled batch. Health Canada was advised by me but the damage, to my body, has been done. Health Canada told me a pharmacy does not have to keep track of the Lot numbers.
I have a new doctor and a new pharmacy… but cannot of course get a new body.
I feel betrayed, lied to by omission, and I hope that everyone who has not stopped this dangerous substance from being ingested, reap what they have sewn.
Please excuse typos but it hurts to type even on an ioad. Bless all the thousands of injured by this…..because of the greed by drug companies and turning a blind eye by the meducal community.