A lot of awareness of fluoroquinolone toxicity has been gained in the last few years. In 2011, when I got floxed, the biggest facebook support group for “floxies” had about 600 members, news stories about fluoroquinolone toxicity were few and far between, and people seemed to be reluctant to share information about fluoroquinolones on their social media accounts. Today, the biggest facebook support group for floxies has almost 4,000 members (and many people have come and gone, so there have been more than 3,400 people who are aware enough of fluoroquinolone toxicity to join the group), news reports about the dangers of fluoroquinolones seem to come out on a weekly basis, and people are screaming about the dangers of fluoroquinolones in every way they can – through their social media accounts, telling their personal stories on web sites, commenting on news stories, and through talking to their families, friends, doctors and anyone else who will listen to them.
We’re making progress. We’re getting louder and stronger.
Even the FDA, the slow-moving behemoth that it is, has made some movement toward acknowledging the dangers of fluoroquinolones. In 2013 the warning label for fluoroquinolones was updated to note that PERMANENT peripheral neuropathy is a possible adverse effect of fluoroquinolones. The FDA stated that this change to the warning label was because of a review of AERS (Adverse Event Reporting System) data that found that many people were reporting disabling peripheral neuropathy as an effect of fluoroquinolones. AERS reports are patient reports. The FDA is listening to our screams.
The warning label change prompted a slew of lawsuits against Bayer (the maker of Cipro and Avelox) and Johnson & Johnson (maker of Levaquin), that hopefully will give some people justice and compensation for the harm that fluoroquinolones have done to them. Just having the door opened for justice is a step in the right direction – it’s progress.
In September, 2014 Dr. Charles Bennett filed two Citizen’s Petitions with the FDA asking them to change the fluoroquinolone warning labels to note “mitochondrial toxicity” and “psychiatric adverse effects.” The FDA’s response to those petitions is still pending, but the petitions themselves are valuable, both in that they are communications with the FDA, and that they give victims of fluoroquinolones credibility.
More than 60 news stories about the dangers of fluoroquinolones have aired in the last year. Each of these news stories was made possible by people reaching out to the news media. They wouldn’t have happened without people advocating for themselves and speaking up. With each news story, the word spreads about the dangers of fluoroquinolones, and the more people are aware of fluoroquinolone toxicity. With awareness of the dangers of fluoroquinolones comes avoidance of them, and that’s certainly progress.
One of the most influential news-stories about fluoroquinolones was “Local woman says popular antibiotic killed her husband” which aired on WSB-TV Atlanta. It had more than 135,000 social media shares, and Levaquin prescriptions in the Atlanta area dropped dramatically after it aired. It not only successfully spread the word about the devastating effects of fluoroquinolones, it changed prescription rates for fluoroquinolones. That’s huge! (Though, of course, it is horrible that Chris Dannelly lost his life. My eternal condolences to his family.)
A lot of progress in awareness of fluoroquinolone toxicity has been made through social media. When I first got floxed, people didn’t mention fluoroquinolone toxicity on their social media pages. There seemed to be a lot of silence, and even shame, around it. Now there are people who share information about the dangers of fluoroquinolones on their social media accounts regularly. With every “share” or “like” people are reached and progress toward awareness is made. Every little step rolls the ball in the right direction and gives us momentum. A huge THANK YOU to everyone who shares information about fluoroquinolone toxicity with their social network!
While it is sad to see the devastation that fluoroquinolones bring to every floxed individual, it is nice to see that the awareness of fluoroquinolone toxicity is reaching people, and that they are reaching out for support on facebook. The community of floxies helping and supporting each other in The Fluoroquinolone Toxicity Group has grown significantly. Each person who connects their health problems to fluoroquinolones is a step toward general awareness of fluoroquinolone toxicity. Everyone who joins The Fluoroquinolone Toxicity Group realizes the dangers of fluoroquinolones for themselves and their loved ones. Of course, I hate to hear of people getting hurt by fluoroquinolones, but with each new member to the group, awareness and support are gained.
Even this site has gained a lot of momentum. When it launched in 2013, Floxie Hope was getting about 5,000 visitors per month (which I was THRILLED with). Now 30,000+ visitors per month view Floxie Hope. I’m proud to be part of the movement toward awareness of the devastation that fluoroquinolones bring, and I hope to be part of movements to study fluoroquinolones and limit their use.
All of us who are telling our stories, supporting each other, and sharing information about fluoroquinolone toxicity are making progress. Thank you to all of you!
Admittedly, we have a long way to go before paradigms about the safety of fluoroquinolones shift in the general population. There are still some doctors who are giving FQs out like candy. There are still people who deny adverse effects of fluoroquinolones that are listed on the warning labels. There is still a lot of research that needs to be done. But progress has been made in the last year, and this post is to celebrate that progress. Good job, friends! Keep going!
300000 a month is a crazy number well done for your work lisa
Another great article! Thanks, Lisa, for bringing awareness to the dangers of fluoroquinolones.
“One of the most important lessons in life is learning to turn what seems like senseless pain and suffering into something meaningful for yourself and others.”
You have certainly done this.
I agree Lisa that it is getting more attention. I notice a news article every week. Sadly, that means it is STILL injuring new people. I wish I had the same faith in the FDA that you do, though. As I said before—this drug doesn’t need new labels—doctors are NOT reading them. It needs to have its use restricted to life and death situations. As has now been mentioned a few times, side effects are NOT rare. The FDA had reports of 3,000 deaths and 50,000 side effects and it is estimated that those figures represent a mere ONE percent of what is actually happening. Cipro is on a list (wish I could find it now) of drugs in Europe that they are considering “pulling.”
A friend was in a pharmacy a few days ago when she overheard that the woman ahead of her was getting a prescription for Cipro. She very nicely said “I’m sorry, I couldn’t help be overhear you are getting Cipro. You might want to google that before you take it.” The woman’s response? “Mind your own business!” Sigh. And I posted something the other day in response to some article from Huffington Post. It was only indirectly linked to Cipro but I put a warning in about it at the end. OMG! I got piled on. “Why would you want to take a drug away that helped us?” “Go back to school!” Get a life!” (I wish I could.)
Still, I continue my crusade. I have now written Atty Gen Loretta Lynch (please do so—three letters from me mean nothing, but letters from a lot of people do—these mfrs need to be accountable for knowing for decades about the devastation of these drugs and marketing them inappropriately for simple infections); my reps in congress and a couple others; Dept of Health and Human Services; FDA (although I think that’s a lost cause. Google FDA, fraud and Slate.com for a great article on the rampant fraud and corruption there) the White House (President, Biden and Michelle) and anyone else I can think of.
Thanks Lisa for another great article. You are my hero in all this. And if it hadn’t been for floxie hope I never would have known what hit me.
You may have seen this already, but here’s a recent one from David Perlmutter–a fairly well known MD and author who straddles the conventional and alternative medicine fields: http://www.drperlmutter.com/dangers-fluoroquinolones/
Every time the media runs a story, the numbers in the group increase!
I noted the name of the “apologist” for Bayer, who says at the end of the piece that Bayer cares so much about patients, and to contact your health care provider if you notice any side effects. That is so disingenuous since by that time the damage is already done, there is no cure, and the doctors don’t know what the hell to do with it (except say “no, stay on it–it can’t be the Cipro.” Anyhow, I just sent an email to her. If you would care to do the same it is rosemarie.yancosek@bayer.com
I took Cipro July 9th am now very painful joints. Three MD said I have POLYMYALGIA RHEUMATICA and must take a low dose of steroids! So, so scared…..
Janea. August 24 2015
Pain in arms now is so great I can not sleep!!!
Sent from my iPad
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Think our group “FQ toxicity group” is now over 5300! Thanks for all you do I suffered an aortic aneurysm over this poison….
Today (October 31, 2017) I went to a doctor at UCLA with hope in my heart that he would help with the pain in my let caused by Ciprofloxin poisoning in August. I took 4 pills ended up in emergency unable to walk or use my arms. After horrifying bouts of pain in all my joints, hips, muscles, it settled in my right leg. I don’t know if it “ate” my tendons around my knee and under it, but now it is bone on bone! The doctor today refused to get on with surgery to replace my knee or even listen to me about the Cipro. He “was” going to give me cream for the pain but said “You are too allergic to everything.” So now I will still not be able to sleep due to the pain and I am in constant pain and cannot resume my normal life! His diagnosis (which is out of the blue since I never had pain before) was Rheumatoid Arthritis. And he said, “This doesn’t happen over night”. Okay….maybe not…but it didn’t hurt before AND how does he know how the cipro ate the tendons? I did everything before, including hiking. Now I am a lump. A fattening lump. I am seeking a doctor that understands and BELIEVES me. Doctors do not believe us……..sigh…. I have SIX close friends on crutches with cipro poisoning. One who got skin cancer from it and also had her eye muscle deteriorate and had to have surgery to pull the muscle up! I have written every medical board in the US, their response so far? “Our hands are tied.” Uh huh. How hard would it be to tell doctors not to prescribe except for the anthrax and plague it was designed for? I also wrote the Surgeon General. I also reported TWICE to the FDA and asked what yokels are passing these drugs and lets give them to them and their families!!!!! : ( Sorry….anger popped out with my popping joints…… Prayers out to all of you. Karen
Many of u may know Kathy’s story, R.I.P. MARCH 28, 2018. Since that time there has been front page coverage on fluoroquinolones & suicide. Interview with Tim Alexander documentary Legal Death-In drugs we trust. Interview with KFVS-TV (to air soon) meeting with CEO & Chief pharmacist, and a continued awareness on the adverse effects of fluoroquinolone antibiotics. After 9 months of looking into every possible way to fix what is broken. I have concluded the system as it stands (FDA BLACK BOX WARNINGS) chain to DOCTORS & PHARMACIST is very very broken. And then that chain to PATIENTS. Let me stop and ask: is there ONE person that is floxed if your providers had literally told u the meaning of BLACK BOX and the danger would u have taken a fluoroquinolone. HELL NO. Now, let me explain how the SYSTEM is broke. Yes the FDA when they issue a BLACK BOX WARNING they post it on there website. Does medical providers DOCTORS & PHARMACIST have access yes. Are they required by law to keep up with or even heed or do there due diligence, (NO). They (MEDICAL PROVIDERS) continue to do as they WANT. In my opinion THIS HAS TO STOP. Therefore I have taken the next step other than awareness. I have contacted a congressman I know. At this time are looking into FDA laws that can be enacted without legislation. I honestly feel this is a FIX to a huge problem of RESPONSIBILITY & liability. I know this may be a huge cross because of those two words. Responsibility& liability. But one worth pursuing. If u would like to join me in this pursuit please PM me.
PS and yes, suicide has been OFTEN thought of…..nonstop pain with no solution and living now off social security…..this whole thing is just sad, sad, sad……
Pss…… Ciprofloxin AND Meloxicam. Two known poisons.
Hello, “L”. Thanks. I will contact Dr. Miguel Gonzalez in Thousand Oaks. It is about three hours from me but worth it. I am currently seeing a doctor in Beverly Hills. I am on Medicare and pay extra for Aetna so I have coverage with health insurance now. My next step is double knee replacement and after that, something with my ankles. I never EVER had any troubles previously…until that fateful day….