#ade's

New Post has been published on http://www.myquinstory.info/fluoroquinolone-delayed-adverse-events-showing-up-in-more-and-more-studies/

Fluoroquinolone Delayed Adverse Events Showing up In More and More Studies

The Fluoroquinolone community has known for a very long time that delayed adverse events to fluoroquinolones (FQ’s) were a reality, even though when I initially entered into the community 13 years ago, “delayed reactions” as they were called then, were considered rare and terrible.

The flox report which, at the time over a decade ago, was a breakthrough piece of research put together by citizen scientists. It characterized these ‘delayed reactions’ as a more dreadful pathology that was rarer and very chronic.  Since then however, much has changed and a good portion of the data in the flox report is now outdated.

With the benefit of over a decade of 20/20 hindsight, anecdotal information has been showing us that delayed adverse events, or what I call FQ late effects, are more commonplace than once was thought.  And now, current academic research that is tricking in from various parts of the globe, is starting to lend credence to our own community collected anecdotal data, reinforcing what many in the community have suspected all along.

Recent Research

Recently researchers out of India and Switzerland studying FQ’s as therapy for Tuberculosis noticed a high incident of joint pain and tendon injury when the FQ’s were involved in the treatment.   The paper titled “High Incidence of New-Onset Joint Pain in Patients on Fluoroquinolones as Antituberculous Treatment” published January 17, 2020 focused on “joint pain incidence during antituberculous treatment among patients diagnosed with tuberculosis visiting the outpatient clinic over a duration of 1 year, as well as assessed their link with fluoroquinolones.”

While I appreciate the all current academic studies that focus on FQ’s adverse events, the finding that FQ’s can cause joint damage and pain is nothing new.

I believe the important point is contained farther down in the article.

There were 260 patients total. Group A had 140, group B had 81, and group C had 39.

Group A received the drug pyrazinamide alone and 24 of the 140 patients or 17% experienced joint issues.

Group B received a fluoroquinolone alone and 32 of the 81 patients or 40% experienced joint issues.

Group C received both pyrazinamide and a fluoroquinolone and 20 of the 39 patients or 51% experienced joint issues.

For me the main takeaway is what they call the median latency to the onset of joint pain or the time it took for the problem to appear.

The median latency to the onset of joint pain 138 days group B, and 88 days in group C.

This study showed that those receiving FQ’s had a higher incident of joint problems and a delayed onset time of up to 138 days or 4 ½ months!

Delayed Permanent Peripheral Neuropathy

Research from the University of Dundee published on April 29, 2019 has shown that FQ’s increase a patient’s risk of suffering a serious, potentially permanent, and delayed onset nerve damage event by almost 50 percent (source).

Their nested case-control study showed that current use of systemic FQ antibiotics increased the risk of peripheral neuropathy (PN) by 47%.  The greater the cumulative exposure the higher the risk, with males and those over the age of 60 at greatest risk .

The most damning evidence was their finding that there was a significantly increase in the relative incidence of PN within 30 days of oral FQ therapy, which remained significant for up to 180 days following exposure!

Additionally, the PN risk may increase by approximately 3% for each additional day of FQ exposure.

Delayed Carpal Tunnel

The study “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” published in April of 2017

Woman holding wrist

discusses FQ usage and the risk for Carpal Tunnel Syndrome (CTS).

The study found that any use of FQ within the year prior to CTS diagnosis was associated with a 34% and 36% increased risk of CTS in the primary and sensitivity analyses, respectively.

Their findings may suggest a possible delayed response with FQ use and the development of CTS.

The Veracity of Anecdotal Data

My adverse event to the FQ’s did not manifest itself for several months after ingestion.  It took me retooling, so to speak, investigatory skills from my career in law enforcement, to track down the suspect, Levaquin.

Since then I have interacted with hundreds.  Some of these individuals are very smart, and like me, they pieced together their own clues.  The connected the dots and re-established the cause and effect linkage.

I have to admit that data collection is difficult.  It is tough to weed out confounding data and separate fact from fiction.  There is a certain percentage, where after careful examination, another pathology can be assumed, and then there are those who are using it for personal gain, which confounds the processes a little further.  But all in all, after a while a fairly accurate picture emerges and I wrote about this in the article The Fluoroquinolone’s Inconvenient Truth.

Despite the fact that there are detractors to the veracity of our anecdotal information, others withing the academic and professional medical fields recognize the accuracy of the data and are using it.  

Just Scratching the Surface

Academic research is just now incidentally scratching the surface on the subject of delayed adverse events, or late FQ effects.  This data is showing up and honest academic researchers that are not under the thumb of conflicting interests, are starting to report the connections. Connections that many people suspected all along.

The adverse events of FQ’s are disparate and by all definitions, outrageous. They range from permanent nerve damage, tendons large and small spontaneously rupturing, organ failure, psychosis, and dozens more.  Most doctors consider this broad ranging adverse event pathology from an antibiotic outrageous and when you throw in delayed onset…. they find it preposterous.

Regardless, we are starting to see these delayed adverse events emerge in the data.    If researchers would just look, they would find these correlations which are normally overlooked because the cause and effect are separated by a very subjective period of time. 

Resistance is Still Strong

I believe that the medical community is rife with cognitive dissonance. Cognitive dissonance is a universal human phenomenon and it is based on the assumption that people want consistency between their expectations and reality. Because of this, they contort their thinking into knots to make that happen. In the case of FQ adverse events, it is to preserve the notion that our efforts help rather than hurt, so their impulse is to attribute the harm to something other than their intervention.

This cognitive dissonance is re-enforced in the paradigms taught in medical schools that are all tacitly funded by the pharmaceutical companies with conflicts of interest (source).  Unfortunately, many doctors never break out of this sphere of influence.

For instance, a pro FQ propaganda piece surfaced in May of 2019.  Titled, “Oral fluoroquinolones carry small risk of peripheral neuropathy,” the authors write “there are no strong hypotheses regarding the pathomechanisms of fluoroquinolone-induced neuropathy.”

Many medical professionals, based on their indoctrinated training, simply can’t wrap their heads around a differential diagnosis to include the FQ’s.  Many still deny the possibility outright or at the very least call it extremely ‘rare.’

After all, will the average practitioner suspect peripheral neuropathy in a patient prescribed the FQ’s six months earlier?

Or, will they connect carpal tunnel or joint issues in patient who received FQ’s months or years earlier?  What about heart problems, CNS issues, etc…?

 The answer to these questions in most cases is No, they will not make the connection.  If the patient doesn’t connect the dots, then the facts are lost in time and because of this, delayed adverse events, such a peripheral neuropathy and others, do not get reported accurately.

I will concede years ago connecting these delayed adverse events to a pharmaceutical was very difficult.  Medical science’s knowledge about things such as DNA and mitochondria was limited. Today, we know much more and when you look to the DNA and mitochondria you will find your pathomechanisms for a whole host of delayed onsets pathologies.

New Post has been published on http://www.myquinstory.info/the-fluoroquinolones-inconvenient-truth/

The Fluoroquinolone's Inconvenient Truth

If you are newly floxed, let’s say two years or less, or if you are in a bad space emotionally it’s probably best that you pass this article over.  Seriously.

When I started this website years ago, I was faced with an overwhelming about of data.  Here I was, blogging about fluoroquinolones (FQ’s) as a cathartic release, unprepared for the road on which I was about to travel.  Literally, I was totally unprepared to face the number of people who were travelling, more or less, the same road.  I knew a lot of people had experienced these adverse drugs events (ADE’s), but the actual numbers ended up beyond my imagination.   As a matter of fact, prescription drugs are the third leading killer of people in the U.S. and Europe, only second to heart disease and cancer (1), the the FQ’s are a big part of that. 

ADE’s have complex manifestations, and the FQ’s are the poster children of complex manifestations.  The modern medical establishment has a very tough time recognizing ADE’s from pharmaceuticals, even from those drugs that are likely to create ADE’s, so asking them to recognize FQ ADE’s is nearly impossible.  

The FQ class of antibiotics are capable of setting into motion an idiopathic syndrome that causes numerous symptoms, of which can number into the several hundred. The adverse events of FQ’s are often disparate and by all definitions outrageous to a classically trained doctor.  Although I am not making excuses, there really is no way to quantify this type of insidious damage based on the training of most doctors. 

Mining Data

Mining data from this realm is challenging to say the least, and, the people who are supposed to be doing it, aren’t. That, unfortunately, leaves schmucks like me left to do the dirty work.

Regulatory agencies and pharmaceutical companies, despite now having access to decades of FQ prescribing data, are dropping the ball.  One could easily surmise that they are doing this intentionally because if they did, we would uncover many ugly inconvenient truths.  

I, regrettably, have been wading waist deep in this anecdotal collection of FQ ADE information since I started this website since 2009, but at least some of it has come to fruition.  Scholars like Dr. Bennett, Dr. Noble, Dr. Golomb, and others, have tapped me for data in one aspect or another, and I have contributed to the occasional academic paper on FQ’s.

I have found, more often than not, that the FQ data trail leads us into areas where we do not want to go; areas that we would normally avoid, if it were up to us.   One of these ugly inconvenient truths that I would like to  away from but keeps rearing its ugly head is what the medical community refers to as  ‘late effects.’

Late Effects

Late effects are defined by the National Cancer Institute as health problems that occur months or years after treatment has ended (1).

Actually there are only a few classes of drugs that are recognized by the medical establishment as causing late effects.   Among them are topoisomerase inhibitors that are used in anti-cancer therapy (chemotherapy) such as etoposide, teniposide, doxorubicin, daunorubicin, mitoxantrone, and amsacrine (2).

Yet, the FQ’s are topoisomerase II inhibitors.

See the disconnect? 

We expect late effects in some patients who take systemic Topoisomerase Inhibitors for cancer, but the medical system totally dismisses them in patients who take Topoisomerase II Inhibitors as antibiotic therapy. 

The late effects are there, but the medical establishment isn’t looking for them.

Like ripples on a pond, these late effects are spreading out throughout society, and not getting connected back to the FQ’s.

Ever since my entrance into this hellish word called floxing, I have been loosely documenting cases of individuals who were exposed to FQ’s, assumed a recovery, and then developed ‘late effect’ much later on, or those who took and FQ and had an unremarkable course of therapy and then later, much later, developed health problems. 

Falsehoods

There are two falsehoods that have become apparent to me. 

The first, and the most obvious to those who have been personally impacted by the FQ’s,  is that the general population is being sold a false bill of goods that these drugs are safe.  Many doctors, researchers, and the like, find these drugs are impeccably safe. Why? Because they are not looking for the long term collateral damage.   Their eyesight for ADE’s is myopic and narrow.

The second, and the most unpleasant one, if you suffered from an adverse event, no matter how small,  you are home free once you recovered.

Initially, years ago I thought that the pools of late arrivals (those suffering from what is referred to as delayed adverse events), and those returning after having apparently recovered, were both very small.  Regrettably, time has shown me that these pools are much larger than I previously thought.  And that is just from the people who ‘connected the dots’ linking their new health problems to the FQ’s they had much earlier. 

This begs the hypothetical question, “How many people don’t actually make the connection?”  The obvious answer is that we’ll probably never know as the data gets lost in the noise, and the medical establishment will never blame it on the antibiotic…. ever.  

The world’s belief structure about the FQ’s, driven by the medical community, is built on false narratives about safety that frankly don’t exist.

Cognitive Dissonance 

There are many reasons why the FQ’s have fallen so handily into a protective niche in our society: they came on the scene at the perfect time before our knowledge of mitochondria was more advanced, their method of action is poorly understood by the medical community, their unique method of action allows for the development of late effects which separate cause and effect, and medical cognitive dissonance, just to name a few.

I do think that most doctors suffer from cognitive dissonance.     

Cognitive dissonance is a universal human phenomenon and it is based on the assumption that people want consistency between their expectations and reality. Because of this they contort their thinking into knots to make that happen. In the case of ADE’s, to preserve the notion that our efforts help rather than hurt, their impulse is to attribute the harm to something other than their intervention.

Obviously, a cognitive dissonant attitude drives the failure to connect ADE’s to the guilty medications.  This not only fails the patients, but again it fails in reporting statistics which leads the FDA to grossly underestimate the ADE’s experienced by patients.  The bottom line is that doctors and patients believe that the FQ’s are much safer than they really are…and they cling to this belief, despite evidence to the contrary. 

Unpleasant Truths

Today, however, one of my biggest demographics is individuals who have assumed complete healing and have returned.  My data also shows that when they return, many are less vocal than before; they tend to shun FQ related social media and other outlets, so the community doesn’t hear a lot of the stories told by these unfortunate souls.  However, in my little niche, I do, and with regular frequency.

Many times, returning individuals end up in more specific communities such as chronic fatigue, peripheral neuropathy, mitochondrial, neurological, and on and on.  They have one thing in common however, the FQ’s were the initiator.

The detractors to this inconvenient truth are varied, from those entrenched in our political and medical system, to those new to this horror, and to some who are in self-denial.

With hindsight starting to allow us to peer into the once fog shrouded statistics, we start seeing the ugly anecdotal ties to Parkinson’s, ALS, Alzheimer’s and a whole host of other, albeit less serious but still terribly disabling pathologies.

When you look at the recovery stories through this lens, the veracity of the statistics takes on a whole new dimension. People’s recovery, like levels of pain, are subjective, since no one uses the same standard to describe their recovery.  I often get asked the question “What does a recovery look like?”

When you weed out the ones who were probably never floxed in the first place (those who recovered from death’s door in six months or less and are back jogging), or those suffering some other health malady with overlapping symptoms, and then analyze the scant long term data that we have, the picture is . . . not real pleasant.

For those poor returning souls this situation creates a conundrum.  Their message, along with their data, gets lost, delegitimized. It is an inconvenient truth that gets relegated to the dark fringes of the FQ community.  The medical establishment treats these patients the same way, like pariahs, especially if the try to blame their ADE’s on FQ’s.  This often forces drastic measures.

One floxie who I will call ‘Bill’ told me his story which epitomizes this situation:  

It was about a year and a half or so after floxing, Bill started to feel great. He never really was that active in the online support community, feeling a bit out of place or uncomfortable in most conversations.  He remembers telling a few people he was feeling better, so he left, setting the FQ community firmly in his rear view mirror. He was happy to have this bad nightmare behind him. He continued to carry on with his life, yet over the next several years he realized something was not right.  Unfortunately, he started experiencing unusual fatigue and eventually developed some neurologic symptoms. In the back of his mind he knew exactly where these problems stemmed from. Again, most doctors were of no help so he sought out a new doctor, but with a different twist. Frustrated and wanting to get some help, Bill took a drastic step, he lied to his new doctor, telling him that he was suffering from late effects from chemotherapy that he had years earlier.   Bill knew this proposition was dicey and that he would have to maintain the façade, however, for the first time, he received some recognition, instead of a blank stare.  

Time will tell where this leads him. In a sense, Bill wasn’t lying.  He did in fact have a Topoisomerase II inhibitor, he had Levaquin.

To his body, metabolically he received a course of chemotherapy.  

Bill, who thought he was home fee, fell back into the black hole of long term collateral damage from floxing. 

For many, calling Bill’s story rare or unusual makes them feel better.

The inconvenient truth is that Bill’s story is not rare or unusual. The messages of toxic positivity, which I wrote about here, take away from the true devastation that these drugs cause.  Regrettably, medical professionals and policy makers gravitate towards recovery messages and use them as excuses to look away.  This feeds into the cognitive dissonance that I mentioned earlier.  The resulting output is the belief that serious long lasting damage is rare and that these drugs are safe. 

My premise; its all an illusion. 

FQAD outcomes are blurry at best.  There is no long term tracking data done of the floxed population.   Although my capabilities are limited,  my statistics don’t paint a pretty picture. 

This begs another hypothetical question and one that I, like I mentioned earlier, get confronted with on a regular basis, “What does a true recovery from the FQ’s  look like?”  Many times I am asked to speak comfort, when I can’t.

In reality, how many individuals go on to develop other health conditions years down the road related to the FQ’s?  I think the truth would shock us all.   

What about the athlete who can no longer perform in peak condition?  Or a police officer that can’t chase after a suspect?  A secretary who can no longer ‘concentrate’ at her job? A typist who can’t type, a jogger who can’t jog, or a singer who can’t sing? You get the picture.  

Walking Wounded

In first aid and triage they have a  phrase called the walking wounded.  These are injured persons who are of a relatively low priority.  How many FQ related walking wounded are in our society? 

If politicians and doctors believe that FQ toxicity is a recoverable condition, it lessens the amount of energy put towards drug safety and curbing the use of these drugs.  It also alienates the multitudes that become permanently disabled, in one way or another, from these horrible medications.  They have no legitimate label, or recognition.  In other words it goes on….forever. 

I don’t know the exact count of these disenfranchised and damaged people wandering about like battle weary survivors of an apocalypse, and I probably never will.  All I know is that they are there, and there many more than I had even begun to imagine when I started this endeavor.

Do you know of a loved one, a friend, a co-worker, or someone else who suffers from a diagnosis of mysterious origin, such as peripheral neuropathy with an unidentified cause? If so ask them to do some detective work to find out if they have had FQ usage in their past, and not necessarily their immediate past.  Tell them that FQ’s are often given during surgery, often without the patient’s knowledge.

If you are faced with potential antibiotic use, for yourself or a loved one, please become informed as to the choices that you have available. If antibiotic use is necessary, there are generally safer alternatives than the Fluoroquinolones.   Discuss all concerns with your doctor about treatment to help you choose the safest method.