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When you think about medication side effects, what normally comes to mind are some uncomfortable feelings like a a bit of a headache, minor stomach discomfort, diarrhoea etc. All of those have two common denominators: one — they are transient; two — they are mild. How they cause these issues may or may not be known, but generally it can be ignored due to benign and self-limiting nature of these symptoms.
Most people will be likely also aware of some more serious adverse events, such as seizures, anaphylactic reactions. They are usually seen as serious in the sense that they may be life-threatening under some circumstances, e.g. if not addressed quickly enough. In cases where prompt medical care has been provided, those patients are normally expected to make a complete recovery, with a subsequent note on their file under “drug allergies”.
Some patients will also know of more persistent drug reactions, for example peripheral neuropathy caused by linezolid or kidney failure caused by aminoglycoside antibiotics. In these cases, the person taking the drug will sometimes be reassured by the prescriber (if the risk was mentioned at all) that this side effect is normally dose-dependent, appears with long courses and/or high doses of the medication.
This is because pathomechanisms behind these reactions have been described or we know what doses of the drug may cause harm.
If the drug has harmful effects that don’t happen in standard therapeutic doses, but will affect majority of the population in high doses, it will usually be referred to as drug toxicity. Drug toxicity may slightly overlap with high therapeutic doses in case of drugs with narrow therapeutic index (NTI). This applies to medicines like lithium carbonate or phenobarbital, where careful monitoring of their blood concentrations is necessary to prevent harm.
While these reactions can no doubt be very serious1, toxicology studies establishing toxic doses, mechanisms of toxicity, antidotes (where applicable) generally lend some sense of control to the patient and the doctor, empower them to prevent these events, and where they happen — reduce harm and treat them.
What’s so different about fluoroquinolones?
Finally, we are approaching the bizarre and elusive territory of idiosyncratic drug reactions, understood as “unique, strange, or unpredicted reaction to a drug”.2
In other words, we are looking at a drug that may cause severe and persistent effects in a completely unpredictable way. In that, you may have a healthy person take 3 tablets and experience severely disabling, persistent effects. On the other hand, you may have a patient with chronic bacterial prostatitis, who just finished a 2-month long, high-dose course of the same antibiotic, and suffered no ill effects. This suggests non-dose dependent manner, which is a situation much more complicated than simple drug toxicity.
As it is not known how the drug brings those reactions about, there is no way to predict whose life is going to be ruined.
This type of reactions, even though not exclusive to this group of drugs, happens disproportionately often in the case of fluoroquinolones.
Unfortunately, this is something I learned in the most brutal way possible.
“You can go back to the gym in 2 weeks”
Those are the words I heard from the surgeon that performed an elective minimally-invasive endoscopic surgery on my nose3.
This was the main thing I cared about at that moment. It was something that allowed me to stay in shape and unwind at the same time — both of these things were greatly needed due to the stresses of my highly-demanding work.
I was, however, in the middle of transitioning from employed work to freelancing, so there was more freedom on the horizon and I was very soon expecting to leave all the unhealthy elements of my professional life behind. 3-4 hours of this weekly physical gym self-care helped me to deal with that stress and anxiety.
I had it all planned out — first, the nose surgery, then taking extra shifts to self-finance another surgery (chronically ruptured tympanic membrane, cause unknown) a few months later.
The plans quickly fell flat on their face.
After my elective nose surgery, I was prescribed a prophylactic course of ciprofloxacin. I was vaguely aware of some rare tendinopathies associated with its use. Generally speaking, I assumed the surgeon knew what he was doing — I did some research online where he was quite highly regarded, he was also recommended by my friend’s work colleague.
Despite some major organisational nightmares and a pervading feeling of being treated like a cash cow, I can say that the surgery was somewhat successful (if we for a moment focus on the nose and sinuses alone), in that my sinus headaches eventually went away, my nose healed well and I am able to breathe unrestricted through both of my nostrils.
Now, I am going to go into some details of what happened to my body. I do not give a shit if it is not very instagrammable content, I am hoping to convey at least some of the suffering one may experience from a system that doesn’t care. If you are triggered by reading about bodily fluids, body parts, pain, doctors that don’t give a shit about their patients or current state of research (or are too stupid to understand research); doctors who fall victim to the same biases that ordinary non-medical people do, just in a different way; or even doctors that have that basic compassion and maybe even can keep up with overwhelming body of research, but are unlikely to make any difference, as they are working in fundamentally rigged system, better referred to as medical-industrial complex — if you are a patient and are triggered by this, do not read this post, or even this blog.
If you are a still active medical professional, I cannot imagine you being triggered by this — I would be very surprised if you haven’t learned to tune out all unpleasant truths and critiques of this medical enterprise. As I see it, learning to push it all down is a necessary step if you want to stay in medicine for longer than a few years and not experience burnout. To avoid general sense of despair, you need to numb yourself to your shitty working conditions and meagre pay in exchange for seeing tons of suffering, completely avoidable if it was all better organized and not influenced as much by capitalism, current political climate, greed etc.
If you, my non-medical reader can bear some unpleasantness, I am inviting you to stay and I can only hope that a convincing narrative will unravel when reading this post in the context of this blog, and this blog in the context of this post.
The hell let loose
It all went downhill from day 4 of my post-op medications, when I woke up thinking that my trousers had shrunk in the washing machine the day before, as there was a lot of pressure on my abdomen. This was unfortunately my first rationalization of the hell I was soon to endure.
After I ate the first meal of the day, I immediately felt the need to go to the toilet, as I often do. This time, however, having a shit did not get rid of the sensation of still needing to go. Soon enough, probably some 20 minutes later, I was back for another round of straining, to pass the most pathetic sliver of shit you have seen. It wasn’t diarrhoea, but a sensation called tenesmus – feeling of incomplete defecation.
In my worst nightmares, I didn’t think it possible for a man to go from eating 3000kcal per day to barely being able to tolerate meagre 1700kcal — due to incessant suffering — in less than 48 hours.
Eating dinner only made this worse, so I was in and out of the toilet for the remainder of the day not really passing anything, but feeling as if I constantly need to have a bowel movement.
I also experienced two other weird symptoms — sharp rectal pain during defecation and perineal pain not related to defecation. The first one I rationalized as haemorrhoids (you don’t really develop haemorrhoids in one day, but that made the most sense at the time), the second one I put down to straining so much that I pulled some muscle in my crotch. In a few days I also developed dull scrotal pain, as well as paresthesiae — tingling, burning and buzzing of my perineal region and scrotum. My rectum feels full, as if there is a foreign object inside it most of the time, and it is also often burning.
I have read the entire datasheet of my generic ciprofloxacin to make sure I do not need to discontinue the medication. The relevant bits only stated that diarrhoea, bloating, abdominal pain are all common transient side-effects. It only said that if diarrhoea lasts longer than the course of the treatment, it may be C. diff infection and to seek medical attention.
Fluoroquinolones in the country where I had them prescribed don’t carry any black box warnings. They are instead listed in the datasheet as any other adverse events. Even if they were, it wouldn’t help my situation due to my unusual presentation of symptoms. (There are also some vague warnings from EMA that no doctor reads or believes.)
Naturally, all of this put me at ease. Given that I only experienced any side-effects on my 4th day, I decided to persevere for one more day (my course was 5 days long), expecting all my symptoms to soon go away.
By day 5, my previously flat abdomen already distended to the size of a watermelon (I may post a picture later, not sure yet) and I felt massive whole-abdomen 24/7 sensation of bloating. This bloating felt (and still feels to this day) as if your stomach/bowels are being pulled apart by horses after eating an adult-sized meal (and only marginally better after eating a very modest low-FODMAP meal). I also developed migrating abdominal and pelvic pain that may last 12+ hours from eating.
In the first 2 months I lost over 10% of my body weight, at 4 months I was nearing 20%. I developed bloating, abdominal, rectal, perineal, scrotal pain, burning and tingling.
In my worst nightmares, I didn’t think it possible for a man to go from eating 3000kcal per day to barely being able to tolerate meagre 1700kcal — due to incessant suffering — in less than 48 hours.
In the first 2 months after this event, I lost over 10% of my body weight, at 4 months I was nearing 20%, to then plateau. I developed generalized muscle pain that only got slightly better, as I started to forcing myself to eat more, at the expense of my abdominal symptoms.
Fast-forward to today, nearly 1.5 years later, I still have the very same 24/7 disabling symptoms, including a visible abdominal distension that makes me look 8-months pregnant at all times. I keep having to decide if I’m currently bothered more by muscle or abdominal pain, so I can adjust my calories. This whole situation has already cost me:
I lost the ability to believe that I won’t spend the next several decades of my life in unbearable suffering, being unable to eat without pain.
- a few months’ worth of my work
- ability to work full-time
- ability to eat anything at all without pain
- ability to exercise
- ability to be happy and enjoy life
- ability to go outside my house without some major preparations
- ability to plan for the future
- ability to believe that I won’t spend the next several decades of my life in unbearable suffering, being unable to eat without pain
- all of my savings
- my respect towards doctors
- my sanity
I have worked with various doctors (11 of them if I’m not mistaken) to try to find the cause of this state of things and find a treatment that would at least allow me to go back to living a non-disabled life. I’ve had a lot of tests and tried probably over 20 different medications to 0% improvement.
I want to leave the details of this ordeal for another post. I have found out in the most painful way that if you develop a rare disease, you must spend several hundred hours reading research papers trying to piece together what happened to you and how to help yourself, as no one is ever going to care about your life as much as you do.
What is to be done?
This is sadly the state of things — if you know how to read research, you must become an expert in your own condition, as most of the “professionals” with a lot of acronyms before their names will be clueless, not up to date with research or too broken by the system, and you will be left to rot.
If you suffered medical gaslighting or any iatrogenic harm due to malpractice, or lack of informed consent — you should never shut up about it.
So, if you suffered medical gaslighting or any iatrogenic harm due to malpractice, or lack of informed consent — you should never shut up about it. Especially if someone’s opposition is hidden behind a veil of concern-trolling. If someone is saying that you should not be telling people to avoid certain drugs, because you may prevent someone from taking a life-saving medication yadda, yadda, you should double-down. It is not coming from a place of care, but from a place of control. Belief that only the professional class has the status of knowers of their scientific specialisation is one of the most prevalent technologies of power in the society — doctors’ knowledge about ailments, psychiatrists and psychologists of what and how people feel, managers how to organize a workplace. People are denied the knowledge about their own bodies and are rejected as unreliable narrators of their own lives. Their symptoms are scrutinized, taken apart, their pain is simplistically quantified, to then be decided it is not “bio”, but “psychosocial” and that they should think about it less.
Guaranteed, people taking drugs for life-saving indications should still know their risks, especially disabling risks.
“Do not take it” is not saying that the indication for prescribing some drug was wrong and the doctor doesn’t medically know shit.
It is a political statement that screams: “The support system is nonexistent, so it may not be best for you to take this medication unless you have absolutely no alternative. Because should you get any of those disabling side-effects, you will get no help. Doctors will have no clue how to diagnose or treat you. Apart from pain, you will endure gaslighting from the doctors and maybe your family. You will need to fight tooth and nail to be seen by the system who is supposed to help you. Instead you will be shat on. Btw, you may lose the will to live.”
“Do not take it” is not saying that the indication for prescribing some drug was wrong and the doctor doesn’t medically know shit.
It is a political statement that screams: “The support system is nonexistent, so it may not be best for you to take this medication unless you have absolutely no alternative.”
References:
- “Serious events are those which are persistent, irreversible, slowly reversible, or life-threatening, possibly resulting in hospitalization, disability, or even death.” via https://go.drugbank.com/categories/DBCAT003972 ↩︎
- Moini, J., Logalbo, A., & Schnellmann, J. G. (2023). Pharmacogenomics, drug toxicity, and environmental toxins. In Neuropsychopharmacology (pp. 75–96). Elsevier. https://doi.org/10.1016/b978-0-323-95974-2.00013-x ↩︎
- Septoplasty, turbinoplasty and FESS. ↩︎