adverse reactions fluoroquinolones

When Investigating Fluoroquinolone Reactions, Move Beyond the ER

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When trying to determine the danger associated with a drug, the number of Emergency Room (ER) visits that result from use of that drug is often cited. While anaphylactic shock and other acute ER worthy reactions should certainly be measured, exclusively looking at how often a drug leads to ER visits is not a comprehensive, or accurate, way of determining the danger of a drug. Simply looking at ER visits leads those trying to determine the risk associated with a drug to fail to take into consideration chronic illnesses and conditions that are caused by prescription drugs, and leads them to only recognize adverse reactions that are immediately life-threatening. Acute and temporary reactions are over-emphasized while systemic and chronic reactions are under-recognized.

When Only ER Visits are Considered, Fluoroquinolones Look Safe

For example, when comparing the safety profiles of different antibiotics, the following was noted in the Journal of Family Practice:

The Centers for Disease Control and Prevention estimates that adverse events from FQs (fluoroquinolone antibiotics) leading to emergency department (ED) visits occur at a rate of 9.2 for every 10,000 prescriptions. That’s higher than the ED rates for cephalosporins (6.1 per 10,000) and macrolides (5.1 per 10,000), but far lower than for penicillins (13 per 10,000), clindamycin (18.5 per 10,000), sulfonamides (18.9 per 10,000), and vancomycin (24.1 per 10,000).

Thus, fluoroquinolone antibiotics are slightly less safe than cephalosporins and macrolides, but slightly more safe than penicillins, clindamycins, sulfonamides and vancomycin, right? That’s what the statistics around trips to the ER clearly note. However, what these data fail to take into account is that adverse reactions to fluoroquinolones are not generally allergic or acute reactions, whereas adverse reactions to penicillins, clindamycins and sulfonamides are. The ER is the place to go when suffering from an acute reaction. When a patient is going through anaphylactic shock or inflammation that is threatening their life as a result of an allergic reaction, the ER is where their life can be saved.  It is where epinephrine, steroids and antihistamines can be administered, and those drugs can save the life of a patient experiencing a severe allergic reaction.  Adverse reactions to fluoroquinolones are not allergic reactions. Though anaphylactic shock can occur as a result of taking a fluoroquinolone, it is an uncommon adverse effect.

More often, those experiencing adverse reactions to fluoroquinolones experience weakening of all of the connective tissues in their body (especially tendons), peripheral neuropathy, insomnia and/or other CNS related symptoms, debilitating fatigue, dysautonomia, etc.  None of these conditions warrant a trip to the ER, yet they are serious and severe symptoms of Fluoroquinolone Toxicity Syndrome. In only looking at ER visits when trying to determine the safety of a drug, the symptoms of an adverse drug reaction that are chronic, as opposed to transient like allergic reactions, are systematically disregarded and the safety profile of the drug is not accurately represented.

Conditions that can be quantified and measured using tests and data-points that are currently easily at the disposal of doctors, and conditions that can be rectified through the tools that are available to doctors – like allergic reactions to penicillin – are recognized.  Everything else is considered to be non-existent, mysterious or all in a patient’s head (as if what is in a patient’s head isn’t important). Systemic, chronic injuries caused by fluoroquinolones and other drugs are not seen because only adverse drug reactions that result in ER visits “count.” This is a problem because if doctors are only looking at a single data-point for determining the safety of a drug, and that data-point is the wrong one to look at, no one is getting an accurate or complete picture of the safety of drugs.

The frequency of adverse reactions to drugs that are more chronic and systemic in nature can be determined through long-term studies that take into consideration things like lifetime tolerance thresholds, delayed adverse reactions, etc. They should be implemented so that patients and doctors alike can have an accurate and comprehensive notion of the dangers of the drugs that are prescribed. ER visits are easy to calculate while long-term studies that recognize issues that are difficult to quantify (because the right tests are difficult to find and expensive to administer) are very difficult to conduct. Therefore, out of laziness, inertia and lack of funding, the wrong data is considered and drugs that cause chronic issues are falsely thought to have inflated safety records.

Asking the wrong question and expecting the right answer has never served anyone well, and doing that systematically in medicine is not serving patients or doctors well. It is not good for healthcare and it is not good for anyone seeking the truth about adverse drug reactions. If one wants to know the answer to the question of “How safe are fluoroquinolones?” we must move beyond trips to the ER and standard acute adverse reactions. Simply looking at ER visits is intellectually shortsighted and it leads to a false sense of security when prescribing dangerous drugs. Perhaps gathering some additional data-points should be considered.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site, www.floxiehope.com.

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If you have experienced injury or illness from a fluoroquinolone antibiotic, share you story.

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This article was published previously in December 2013.

Becoming the Person I Hoped I Was

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When life changes its mind about the size of the mountain you’re climbing, you will suddenly find that you have some decisions to make.  My husband got sick.  He was hit, badly, with long term side effects stemming from a short course of Ciprofloxacin (Cipro), a fluoroquinolone antibiotic. The side effects from Cipro can be a horrific and long term, but are often invisible. Blood tests come back normal, neurological exams reveal nothing of note, the sufferer often looks fine, and worst of all, most doctors are completely unfamiliar with these adverse reactions. This of course means that most people are completely unfamiliar.  We certainly were.  But without a doubt my husband was sick, and I had some decisions to make. The biggest decision I at first didn’t know I was making (daily, even minute by minute) continues to be this: what kind of person am I going to be?

I have unknowingly been faced with this decision before. Two years ago, James, the husband of a coworker got sick. Really sick. He had stage four esophageal cancer, and it was very unlikely that he would survive long after the “last hope” surgery.  His wife was not in a position to stay home and take care of him and she had to continue working full time. They also had two elementary age girls. Not much could be worse.

After his surgery, James had trouble getting enough calories. I like to bake so I made him some cookies, and a couple of chocolate cakes. Actually, what I really did was make cookies and cakes for my future husband and for parties, but I made sure to double the batches so I could give some to James. This was the extent of my support. James and his wife expressed their gratitude far beyond the reality of the gesture. This attention embarrassed me a little, but mostly made me feel rather pleased with myself. Yes! I am one of those people who bake when my acquaintances are ill!  What an amazing, empathetic, wonderful person I am. I did not go so far as to credit myself with James’s survival and subsequent return to health, but I allowed for how the chocolate probably helped.

I had made the decision to act on my compassion. A little. Well, not so very much actually. Almost literally the crumbs from my kitchen. Yet I now understand the level of gratitude around a few cookies. Today similar small gestures from the people around me stun me with appreciation of my own. I understand it now. My friend makes enough extra soup so that I can have lunch for three days. My coworker orders the annual holiday craft for my students without bothering me with the details. Another friend texts to see if I need anything at Trader Joes. “I’m going later, what can I get you?”  These moments stick.

Cipro toxicity isn’t like cancer. It isn’t something that people already understand to be a struggle. Like many chronic conditions, it can become invisible to those not suffering. It is easy to ignore something (or someone) who disappears from daily life, without any official medical diagnosis. So easy in fact that this is many people’s natural inclination. To ignore or minimize. This was my inclination.

On the best days the gratitude I now feel for small acts of kindness can seem a fair trade for the unawareness that formerly accompanied our good health.  The rarity of these acts makes them more powerful. Many people who know our story ask my husband how he is, but more often people don’t. Ever. I suspect these people do care (or at least I am deciding to believe they do). So what is the disconnect?

From my own experience, reaching out to help anyone in need takes an ability to look beyond, briefly, the ever present squawk from the needs of your own life. That was me.  Since my husband has been sick I have heard from many people about their own struggles. How did I not notice my sister has been fighting through horrible digestive issues? How did I miss my friend having constant headaches for four months (after taking Cipro, by the way!)? How did I miss my coworker’s father passing away?

When I did used to look beyond my life, I would often be immobilized by anxiety. There is a real courage involved in moving past the fear and discomfort of saying something wrong. In the past I lacked that courage. I justified with thoughts that generally began, “I don’t want to remind her of….”  Really? Did I think there was a moment that she had forgotten that her father had died, her husband had cancer, her head was pounding, whatever? No. It may hide for a moment but she always knows it’s there. What she does not know is that I remembered it’s there. And that I cared. It is the rare person who can push past these obstacles and offer something anyway.  It is the rare moment when they do.

I am also grateful because I believe acts of compassion, small as they may be, give me a glimpse into the very best selves of those around me. My father and sister could not be more supportive. My aunt has been lovely. Our closest friends have rallied throughout. Although I already knew this information about my family, many of the friends I have chosen in my life are turning out to have a depth to them that has not been apparent to me before. Perhaps this was always true and I just never had occasion to see it. Or perhaps this is something that my friends are deciding about themselves, in the same way that I am deciding about myself. Maybe with every decision we make there is an associated change in ourselves. I don’t know. I do know that the way this has deepened my feelings for these people is as if, from the mountain, I thought I was looking at the edge of a lake in the distance. But now after climbing a little higher, it turns out it is the beach of an ocean. What a dazzling view.

Since my husband’s illness began 6 months ago, every person in my life has been presenting me with an unintended gift the moment I started paying attention. The gift of example. Everyone has and is modeling the kind of person I want (and don’t want) to be.  Who do I want to be when the people around me are in need?  Do I want to be the person who texts from the grocery store?  The person who takes over chores without being asked? Or the person who is so unsure of what to say that she says nothing at all? (How many times have I been that person? Too many to count.)  It’s an obvious decision once you’re aware of it. It’s a choice that I did not even know I was making before this experience. Non-action is a decision. Generally it’s the worst decision.

I have come to believe more and more that it is our actions that define us, not our thoughts, our intentions, or even our feelings. Still, I wish I could go back in time two years and smack the feelings right out of myself. The silent self-satisfaction over a chocolate cake… how very shameful. There is no way to go back and offer to babysit, or cook a meal, or shop, or just ask (frequently) how things are going, and what can I do for you today to help? Or better, just do something that needs to be done, without asking. I can’t go backward and do that. Most disgraceful for me is that cancer is a very “visible” disease and I did my best to not see it. There is only one way to atone. Open my eyes for the rest of my life, and act on what I see, and even what cannot be seen. It is not a coincidence that every time I see James, he asks if there is anything he can do for us. My husband is sick and I am here now. Life is full of decisions. Today I am deciding to be grateful for the chance to have a do over. From now on I get to decide to be the kind of person I always hoped I was.

 

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This post was originally published in December of 2013. 

Fluoroquinolone Neuropathy Feels Like Acid Burning and Electrocution

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My name is Janet Murray, I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot.  I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more.  These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.

Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ.  He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.

One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors.  I took this combination again and again and again across that year.

Janet Murray - Before and After FQ
This is me before and after fluoroquinolone toxicity.

My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.

The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.

One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.

My stomach almost shut down almost. Every joint in my body popped and cracked when I moved.  My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:

  • Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
  • Swaying, if walking, dizzy, feeling of being “stoned” in the head.
  • Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
  • Arms and hands go dead and numb
  • Constant feelings of being electrocuted
  • Severe bowel constipation
  • Intolerance  to most foods
  • Body hair stopped growing
  • My skin has become very thin and transparent with enlarged veins.
  • Pin prick sores on my legs and what looks like burns all over my body.
    Post fluoroquinolone skin reactions
    On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs.
  • I experience severe changes in body temperature.
  • Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
  • Severe depression
  • Hyperthyroid

And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.

The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything.  I feel like I have been poisoned.  I soon learned, I was not alone.  It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.

Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out.  It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling.  I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.

I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult.  Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer.  I cannot take this much longer. I cannot live with the nerve pain. Please help.

A few other clues that might be helpful for understanding this mess.  When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly.  If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here. Thank you.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with the fluoroquinolone antibiotics, Cipro, Levaquin, Avelox and others: The Fluoroquinolone Antibiotics Side Effects Study. The study is anonymous, takes 20-30 minutes to complete and is open to anyone who has used a fluoroquinolone antibiotic. Please complete the study and help us understand the scope of fluoroquinolone reactions.

Hormones MatterTM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

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