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Comment by avgDev | Hacker News Reader

I hate sounding like an alarmist....but something is extremely wrong with how physicians handle adverse reactions.

So, I took a flouroquinolone and had a text book reaction. 50+ physicians later at mayo and other top US hospitals and I was gaslighted more than helped in any way. I am now in a group for sufferers and meet new people daily, who took the drug and the doctor completely dismissed their neurological issues as anxiety.

After sending documents to my primary he agreed that I suffered an ADR and stopped prescribing it completely unless no other options exist.

"Health care providers/professionals (HCPs) play a critical role in ADR surveillance. Only 6% of all ADRs are reported and under-reporting acts as great impedance in exchange of drug information." https://www.ijbcp.com/index.php/ijbcp/article/view/1652

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The quinolone antibiotics in general seem to be a really nasty class of drug, with a long list of rare but serious and potentially permanent side effects in susceptible people:

https://en.wikipedia.org/wiki/Quinolone_antibiotic#Adverse_e...

https://www.nature.com/articles/d41586-018-03267-5

There is quite a few theories now, such as mitochondrial issues(mayo clinic is doing a study on this). It is actually a Topoisomerase II inhibitor, like some anticancer drugs, but how that all works is a bit above my pay grade and I don't want to mislead anyone about what that could imply.

Edit: I think the reactions are rare but not as rare as we think. The onset of symptoms is anywhere from few hours after a single dose up to 12 months(this is now on the label). If I did not have an instant reaction I don't think I would have believed that a medication I took 6 months ago caused it. I have talked to many individual suffering from SFN, CFS, Fibro, chronic tendonitis issues who had an infection prior and took the drug. The physician never asked and they never made the connection.

Few individuals recovered, only to take the drug again few years later and end up in a worse state.

Primary care in the US is heavily reliant on the most basic heuristics to meet patient throughput requirements. Many clinics are operating at 15 min/patient. And no one wants to spend their free time charting the visit and making necessary orders (pharmacy, radiology, other providers, etc) if it can be avoided - so they try to cram it into that 15 min if possible. So they simply don't have time to ask the necessary questions and perform research.

Not a drug reaction, but I had a rather dreadful experience with Mayo, where I reported severe digestive problems which had led to me losing a great amount of weight over a few months while being constantly in pain (175 to 118, I’m 5’10”). They did some esophagus tests, they looked okay and Mayo wrote it off as “health anxiety”. It turns out I was actually developing a form of adult onset type 1 diabetes (LADA).

Was your blood sugar extremely high during that time before being diagnosed?

I have no idea what it was when I was at Mayo, but later on, yes. I went into diabetic ketoacidosis and had 650 glucose at the ER, with an HbA1c that indicated an average of 300 for the preceding 3 months.

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