My poor mom! She has a cold. She has Lymphoma. And if that isn’t enough, her doctors “floxed” her.
A week ago, she was running a low-grade fever, so I placed a weekend call to her oncologist. Unbeknownst to me at the time, he immediately prescribed her Avelox, without ever seeing her, without determining whether she had a bacterial infection. This is on top of 2 months of prescribed Prednisone, a corticosteroid drug that she was prescribed to help control the side effects from her cancer treatment.
Avelox is a fluoroquionolone. I read the “black box” that accompanied her medication. In the very first sentence it warns that the risk for tendon rupture and central nervous system (CNS) problems is further increased in individuals over 60 years of age (mom is 89), or in BOLD PRINT and CAPITALIZED, those “taking corticosteroid drugs”. The label continues with the statement that Avelox should not be taken unless there is significant evidence of bacterial infection. I quickly called the doctor back (in case he really didn’t remember that my mom was taking Prednisone) and told him that I was concerned. I also explained how I personally was “floxed” (more on that below). He assured me that given her Lymphoma, this drug was necessary (something he determined without even seeing her), and that she would be fine. He dismissed my personal experience being “floxed” as rare.
Well, my sample just doubled from 1 to 2, and I can now say that 100 percent of my sample exhibits adverse reactions to these fluoroquinolone drugs!
In just two days on Avelox, my mom went from being a vibrant, self-aware and easy-going 89-yr-old (despite Lymphoma) to a confused, scared and anxious patient. She became very dizzy, and I could see her confusion and anxiety were getting worse. She continued to have cold symptoms, but it was the CNS symptoms that were alarming. She was falling and very disoriented. I panicked and called the doctor, thinking that maybe her Lymphoma was advancing, taking over. After a 10 minute discussion, it hit me. Mom was “floxed”. Her doctor could only manage “sometimes the elderly have trouble with this class of drugs”.
How could I let this happen!? Why didn’t I insist that she be prescribed another antibiotic? Why didn’t I let my instincts prevail? Why did I let the doctor convince me not to listen to the Black Box warning? Why did I allow him to ignore the warning? Why would I need to fight for a doctor to heed such a warning? Why didn’t I listen to my own hard earned wisdom?
Eleven years ago, I was “floxed”. For those that have not had the pleasure of this experience, “floxed” is an adjective used to describe an adverse drug reaction to the group of antibiotics known as fluoroquinolones. My particular brand of fluoroquionolone was Levaquin, which was prescribed to me after developing a post-operative infection from my prophylatic oopherectomy. Days after my surgery, I was not feeling well and noticed that my incision was looking red and angry. I visited my doctor, who assured me the incision looked normal and attempted to reassure me with “don’t doctors always know best?” (the question now makes me shudder). I was SO “fine” that I ended up with an abscess on my colon that could not be drained, was put on intravenous antibiotics, and spent 3 days in the hospital recovering.
Levaquin made me feel very weird - NOT just your average antibiotic reaction. I felt really confused, so much so that I could barely speak coherently. I later learned that this adverse drug reaction stemming from fluoroquinolones is known as “brain fog”. I was dizzy, nauseous, confused, anxious, agitated and felt like I was having an out-of-body experience. On my first day home from the hospital, I went to get up from bed and felt sharp pains in my Achilles tendons. They were swollen to twice their size, and I could barely walk. I called my infectious disease doctor and his response was “were you running?”. Running!? Oh yeah, I threw on my sneakers and ran home from the hospital post-surgery.
Since I was finding my doctors to be useless at best, dangerous at worst, I began doing my own online research and discovered a long list of known side effects associated with fluoroquinolones - among them, tendon rupture and brain fog. I was horrified and scared. There it was, freely available information and yet my doctors wouldn’t even consider the possibility I was having a negative reaction to the Levaquin. When I showed my doctor several articles printed from the Internet, he pretended to dismiss the information but then did discontinue the prescription.
I ended up with a torn Achilles tendon in one ankle and a partial tear in the other. The dizziness and brain fog lasted almost a year. I visited a specialist in fluoroquinolone adverse reactions and followed his protocol to detoxify my system of the drug. I spent 3 months in a cast, wheelchair, and on crutches. I joined a Fluoroquinolone forum and shared my story with fellow/sister “floxed” members. Some had experienced mild and short-term effects, while others felt the effects of the drug for many years. Most of the side effects were CNS-related and tendon toxicity. I reported my adverse drug reactions to the FDA drug watch and also called the drug company. There have been books written about this class of drugs, one of which included my particular case.
In 2008, the FDA finally increased the warnings on the labels of fluoroquinolones. It now carries what is known as a “boxed” warning, which is the strongest warning applied to medication. It took class action lawsuits and actions by consumer groups to get the FDA to step up to the plate with the “black box” warning. Fluoroquinolones now have a mandatory medication guide, which my mom’s doctor has obviously never read.
Today my mom’s cold symptoms seem to have diminished, but her CNS problems continue. I am so frustrated with myself for not having persevered until that doctor truly considered my concerns about the Avelox and fully justified his reasons for prescribing it, despite the clearly important and relevant Black Box warnings.
Flox me once, shame on you - flox me twice, shame on me!
Have you or someone you know ever been floxed?
Susan Beausang, 4Women.com
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Add a Comment9 Comments
Hello Roxyj,
I am no expert, but I have read that yes, it is possible and not uncommon for those with adverse reactions to fluoroquinolones to have a relapse of symptoms "out of the blue." I suggest you research that online. There are entire online groups of individuals who have been floxed, and among them I'm sure you could find lots of individual stories to help determine how different or similar your experience is.
Best of luck. I hope your symptoms resolve, one and for all.
May 14, 2012 - 6:32amSusan
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Susan - thanks for sharing your story. I too was floxed by Avelox in 2010. I struggled with primarily CNS symptoms. I seem to be having a relapse of symptoms - again CNS related; anxiety, brain fog, headaches, eye lid twitching. My question is: is it possible to relapse seemingly "out of the blue?" I have no idea wh to what might of brought this on?
Thanks,
May 9, 2012 - 6:58pmRoxyj
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Hello Anonymous,
I could not agree more, and I am certain that fluoroquinolones negatively affect more than the elderly, as it was one of this class of drugs that caused my Achilles Tendon to rupture. The very frightening thing is that the side effects often last for years. Very frightening stuff.
March 13, 2012 - 6:30amThanks for sharing,
Susan
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I can relate well to what your mom is going through. I took Avelox in January 2009 & it forever changed my life. I was only 32 yrs. old when I took it so I don't believe it just affects the elderly. After taking the first dose, I immediately experienced extreme dizziness, confusion, insomnia with awful night terrors & hallucinations, horrible anxiety, & debilitating depression. I went from being an active, involved mother of 3 to needing someone to care for me almost around the clock. I was scared to be alone & felt totally out of control & even contemplated suicide which is completely out of character for me. Now 3 years later I still feel effects & have relapses. Mainly I still feel the dizziness & my memory is not what it used to be. I hope your mom is doing better. It's a horrible thing to have to go through. I really feel like this class of antibiotics should be pulled from the market.
March 12, 2012 - 6:16pmThis Comment
Hello Karen,
Please do post your experience and any links you want to share. Like me, I'm sure you wish you had known more about fluoroquinolones and their common side effects BEFORE being prescribed them. Most recently, it was my mom (89 yrs old) who was floxed and I don't know if her mental state will ever be the same, and that's despite the fact that I caught it quickly and insisted she discontinue taking them. At minimum, anyone prescribed these drugs should be informed by their doc's so they can make informed decisions.
Thanks for writing!
September 19, 2011 - 7:25amSusan
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I, too, have been floxed and have had an incredible amount of problems since taking it in February. I'm not even the same person I was last year. Something has to be done about this dangerous drug.
Thank you for posting some links. I have others that I will try and post tomorrow.
Thank you!
September 16, 2011 - 12:44amKaren
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Mary, I am so sorry you're suffering so. I know very well that it is a rare doctor that believes or understands us with respect to these drug reactions. Don't give up.
Unfortunately, I do not remember the specialist's name as it was 10 yrs ago. I can tell you that he was at Georgetown University Hospital. You can try googling the hospital name along with "fluoroquinolone toxicity specialist" perhaps. You might also try the latter without specifying a hospital and come up with more options. I should mention, I didn't have any of your physical symptoms with heart and blood pressure. My symptoms were very much emotional and mental. I read that steroids and numerous other medications can cause a relapse of fluoroquinoline toxicity even many years down the road. This is scary for me as well, given my 89-yr-old mother was prescribed Prednisone at the same time she was suffering fluoroquinolone toxicity.
The moral of all my medical stories and most all of those I hear from others, we have to take the lead. Don't back down to your doctors just because they have MDs as they don't know our bodies better than we do.
Good luck. I wish you recovery.
Susan
There are more an more support groups. Perhaps you've already researched and found them. Hopefully others currently dealing with similar symptoms can help you. I found these:
http://www.cipropoisoning.com/p/helpful-suggestions.html
March 23, 2011 - 6:45amhttp://noquinolones.proboards.com/index.cgi?action=newestthreads
http://www.fqresearch.org/
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Hello, Susan,
Thank you for sharing your stories. Did you really find a specialist for adverse reactions to fluoroquinolones? PLEASE give me his/her name. I am desperate. I was floxed in June 2010 and have been ill ever since, getting worse instead of better. I was catapulted into a seesaw of hypo- and hyper-thyroid conditions when the antibiotic interfered with my thyroid medication, and that set off a terrible chain of events, starting with heart wrenching pseudo-panic attacks. Overnight, I went from relatively healthy - needing no medication except the thyroid meds - to hypertensive and hyperglycemic, requiring blood pressure medication and now being monitored for diabetes. I lost all tolerance to caffeine and cannot drink even decaffeinated beverages. Anything new, including vitamin supplements, brings on the start of another attack, and my heart has started acting up. Only last week did I find a doctor who had even heard of fluoroquinolone toxicity, and even he insisted I had to be over it by now, which is definitely not the case. No one is wiling to consider all the angles to my condition, and as a result i cannot find a doctor to coordinate anything. No matter how often i say I cannot tolerate so much as a vitamin pill, they all prescribe things i cannot take and order tests i cannot undergo. Help! If you know anyone who is familiar with the condition, please let me know. I have to find some sort of medical help, if only to treat the new heart problems without making things worse!
Thank you,
March 22, 2011 - 9:56amMary
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Hello Susan.
Thanks for reading. I too am very curious to hear how many others have had CNS reactions to this class of drugs. Mom's physical symptoms have cleared up, but she remains frazzled and emotionally distraught. So not herself. In that sense, it's more than a fog. It's like a short-circuit that brings mental distress and anxiety. And yet they hand it out like candy. Obviously the Black Box warnings have little meaning in the hands of doctors.
January 17, 2011 - 7:06amThanks for reading.
Susan
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