What is a delayed fluoroquinolone adverse event?
I have experienced a true delayed adverse reaction to these drugs and because of this over the years I have been primarily interacting with others who have also experienced delayed adverse reactions in an attempt to understand the mechanism. Although made famous by the Flox Report, it is difficult, to say the least, to classify styles of Fluoroquinolone Adverse events. For many, delayed adverse events are different than the acute “shotgun” type reactions experienced by many individuals that are more immediately toxic in nature. Delayed adverse reactions are harder to catch and, for many, they are never caught. The reason lies in the very nature of the reaction itself. Because of the unique ability of these medications to separate cause and effect, many individuals never make the connection between the medication and their illness. Although the notion of pharmaceuticals putting factors in place to create health problems years later is not something new, this behavior, goes against what is taught to most medical students, especially for antibiotics. So the adverse event almost never get connected back to the Fluoroquinolone by a physician and this connection almost always has to be discovered by the patient themselves. However, if the patient never connects the dots he/she may never uncover what the root cause of his/her mysterious illness is, or are given a default diagnosis that is a “catch all” for the medical community but really never explains the cause.
Acute reactions usually dominate the discussions on various Internet forums. The acute reaction sufferer is usually reeling from the horrific “shotgun” reaction that takes the victim by surprise. Something akin to getting the “rug pulled out from under your feet”, the acute reaction usually has a sudden onset, is more frequently discovered than the delayed adverse reaction, and is much easier to connect to the medication, at least for the layman. Most folks who are experiencing acute reactions are in more immediate physical and psychological need, thus the reason for the prevalence of their discussions.
Before I go any further, I believe that a cautionary caveat is in order. It is human nature for us to attempt to place ourselves into a predictable pattern of outcome. That is why all the internet groups are full of people trying to determine how they are going to react. “What is going to happen next?” or “How long will this last?”, are two of the most common questions I get asked. Victims turn to the outdated “Flox Report” and/or cling to all types of varied opinions in an attempt to gain certainty. I understand, as I have done it myself. But, the truth of the matter is that this syndrome creates absolute uncertainty. These reactions are tailor-made for the individual according to so many physiological and external factors that it would be futile to try and list them. Predicting an individual outcome is like setting a date for the end of the world. The minute a prediction is made, this syndrome will come along and prove you wrong. The best you can hope for is to learn to psychologically cope with what is happening, take quality care of your body, and hang on.
But getting back to delayed adverse events, to me, in a nutshell, a true delayed adverse event occurs when there is a noticeable length of time between the conclusion of the course of antibiotic therapy and the onset of the adverse symptoms. During this time the patient, for the most part, is symptom free. This interval usually ranges from at least a few weeks to as long as nine or ten months. After that, the symptoms usually begin slowly building to a crescendo over a very extended period of time. Many times the symptoms build on top of one another at a very agonizingly slow pace. At times the victims may perceive what they believe is a cessation of symptoms. In most cases, these reactions are devoid of the initial horrific “shotgun” reaction that is so prevalent in an acute response. Delayed reactions are no less agonizing than acute reactions, it is just that their symptoms are played out differently and the underlying method of action is most likely different.
I wrote this article for several reasons. First, I receive many queries from individuals who are afraid that they are experiencing a delayed adverse reaction and there are many questions. Second, I like to keep in contact, or be aware of, other sufferers who are experiencing delayed adverse vents for data and moral support. Third, in case these events are driven by a different mechanism the sharing of data about the events is helpful.
Again, I will be the first one to admit that setting defined parameters for the “type” of event is tenuous at best. Again, the reason for this is as complex as a person’s physiology. So often the lines of intensity are blurred as one reaction type (mild, intermediate, severe) borrows from another. Although rare, there are cases where a person taking one pill has an acute reaction that goes on to develop a drawn out parade of agonizing symptoms that lasts for years after the initial acuity settles down. Yet another takes an unbelievable amount of the medication via I.V. and pill form and only has a very mild reaction. The reasons for these variances have to do with the highly polymorphic state of our physiology. Although genetic predisposition can, and most likely does, play a certain role, for me, it does not always fully explain away why some people do not react until their sixth or seventh time of exposure. It is akin to why some people can handle a lot of chemotherapy and others cannot.
If you believe you are experiencing a delayed adverse event to a fluoroquinolone, or any type of adverse vents for that matter, do yourself a favor and please use extreme caution when excepting recovery time-line advice. Although well intentioned, there are many inexperienced individuals that tell the newly involved a specific symptom time-line. Even though it is tempting to grab a hold of such data, it can also set one up for disappointment if your recovery does not follow their pattern. Also, there is no one size fits all treatment program. Do however know that many individuals do, in fact, recover from this damage.
It is not fair what has befallen us. Either way, until the medical community stops handing these drugs out like candy that trend is unlikely to change. Considering the day and age that we live in, it is one of the greatest medical travesties, that is of monumental proportions, that is continually being perpetrated on innocent individuals.