When antibiotics turn toxic

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

by car • 8 years ago

89 47 8 years ago

I was recently prescribed levofloxacin. Within 12 hours, I started having intermittent pins and needles sensations. Rather than soldier through it, I thankfully looked up the symptoms and discovered what terrible damage fluoroquinolones can do. I got off of those antibiotics immediately, and I'm paying close attention for any delayed symptoms. Thankfully the peripheral neuropathy has gone.

When prescribed, I was given no warnings. Not even a pamphlet with tiny print. When I returned to the pharmacists with my complaints and research, they were literally Googling it--they had no idea about the FDA warnings.

gumby• 8 years ago

When prescribed, I was given no warnings. Not even a pamphlet with tiny print.

That's malpractice by your pharmacist. In my state they are required to give you the "label" (that handout) and discuss the drug with you if you haven't been prescribed it before.

When I returned to the pharmacists with my complaints and research, they were literally Googling it--they had no idea about the FDA warnings.

This is even more shocking. If you're not exaggerating, you really should call the pharmaceutical licensing agency and the attorney general's office (who will send to the right agency for your state). Your pharmacy has unqualified people who are putting lives at risk. If they don't even know these basics who knows what other errors they are making?

I am not kidding about calling the authorities. I don't like the "self-righteous complainers" but this is a genuine public health risk.

FWIW I studied for a pharmaceutical license (but thankfully didn't have to take it as it became obvious to all of us that we shouldn't cut that corner and instead should hire an in-house pharmacist experienced with drug development)

tvanantwerp2• 8 years ago

Unfortunately I was vacationing in Hong Kong when all of this happened, and I suspect the laws there are much looser or non-existent.

pkaye• 8 years ago

A lot of anitbiotics are ototoxic (damage to hearing) or nephrotoxic (kidneys).

gordo4• 8 years ago

fluoroquinolones are nasty stuff... should be reserved for extreme cases, like anthrax poisoning, etc... where the benefits outweigh the cons.

Fomite• 8 years ago

And this is starting to take place - reducing fluroquinolones are one of the major cornerstones of antibiotic stewardship programs.

One of the problem is that they also work really well. A broad spectrum bactericidal antibiotic that works really well, isn't in the beta-lactam family (dodging both beta-lactam resistance and penicillin allergies) is very tempting to use.

It's a hard fight, especially in the outpatient setting, because of this.

jglauche• 8 years ago

They gave me ciprofloxacin for about 4 days without knowing after surgery. Every day in, my ADHD symptoms got worse, my psych medication was less effective and my pain levels increased to a point I noted down 10/10 in my notebook + that page looks like I am a mad lady having a total breakdown. One and a half day later, after I got switched to another class of antibiotics my pain levels dropped to 3-4/10 and I could focus better. This happened suddenly, like someone flipped a switch in my head.

On an earlier occasion I was making detailed suicide plans the second week in on ciprofloxacin, which resolved itself shortly after discontinuation.

It has not caused permanent damage to me but this I have to list it as "allergy" for doctors not to prescribe it to me. I had problems doctors not believing the mental issues that this antibiotic cause.

darkerside• 8 years ago

The FDA must certainly have studied this drug before approving it for use on the general public. Is there somewhere we can view records and details of the studies that were performed?

refurb• 8 years ago

Look at the Prescribing Information. It lists the clinical data that was the basis for approval.

notabee• 8 years ago

This was a study that caught my attention recently:

https://jamanetwork.com/journals/jamasurgery/article-abstrac...

Cipro greatly increased the rate of aortic aneurysm/dissection in mice when they were challenged with high blood pressure. The examination goes into detail about the reasons. Essentially the drug both inhibits connective tissue repair and starts degrading it. So the black box warning is about tendons, but there's connective tissue all over the body (like in the aorta). There's probably a subset of individuals more genetically susceptible to the disruption, but it looks like this could worsen lots of latent issues in just about anyone.

jobenjo2• 8 years ago

I had a single pill of levofloxin about three years ago (for pneumonia). I woke up the next day, barely able to walk, with mass tendonopathy (tendon loss) in my arms and legs. I did the research and found out the dangers immediately, but one pill was enough to cause massive damage for me. My recovery took about ~2 years and was slow and challenging, but I'm now part of a facebook group where I see I'm one of the lucky ones. Many people have horrible symptoms and aren't recovering years out. New people join daily.

thenanyu• 8 years ago

I took 4/10 doses 6 years ago and basically experienced the same thing — it's terrifying and the effects linger forever, but I feel thankful and lucky to have my life back

mattigames• 8 years ago

The most worrying part is probably that they gave you a full pill; it seems that something so likely to fail should be given as a microdose to check if its well tolerated by the patient.

jobenjo2• 8 years ago

In the future, I hope there's a blood test to check for susceptibility... There is already talk of a gene that many people who get fluoroquinolone toxicity have in common.

gerbilly• 8 years ago

I suffered tendon damage and other side effects after taking Cipro.

Believe me, the reports of side effects are real.

It took me about 2 years to recover, and probably only because I had a mild case.

God help those pour souls who have a severe case.

To this day if I go back and read the 'floxie' forums it makes me feel blue for the rest of the whole day.

For every person that recovers, it seems like two new cases appear on the forums.

Also, there are many parallels between FQ toxicity and so called 'Gulf War Syndrome'. The soldiers were ordered to take the stuff for months on end to protect against Anthrax attacks.

Udik• 8 years ago

I took levofloxacin for a week about two years ago, for a very annoying infection that had lasted for months. The infection just disappeared within one or two days, and I didn't get any side effects. Writing this here just to add some "negative" report- I wonder how many of the hundreds who are reading this thread took a fluoroquinolone in the past and simply have nothing bad to report. Still, to be clear, I wouldn't take it again, but the probabilities of getting serious damage are probably rather low.

DoreenMichele• 8 years ago

https://news.ycombinator.com/item?id=17831003

lkrubner• 8 years ago

It's interesting to read these stories and realize how different each person's biology is. I took Cipro every day for an entire year and I had no ill effects except in the summer I got a very bad sun burn. Reading these other stories, and considering my own good luck, makes me think we need better tests to see if people have any sensitivity to these drugs, before they take large amounts.

rewgs3• 8 years ago

I worked all my life to attend my dream music school, and once there things went even better than expected. Big things were happening, and bigger things were on the horizon.

I took one dose of Cipro and developed permanent tendinosis. My career was ruined. On top of the tendon damage, my nerves were on fire for about three years, and I went from being extremely mentally sharp to pretty foggy with trouble concentrating or multitasking. Though I can't prove the extent of its reach, I went from being an extremely healthy person to someone plagued by seemingly mysterious health issues -- many ususally found in people twice my age or more -- for years, and my best guess to this day is that damn drug.

Cipro robbed me of my career, my identity, and my 20s. I've never quite fully recovered or found a job I loved as much/was as good at as playing guitar.

Fuck Cipro.

ghostbrainalpha• 8 years ago

Holy shit, I'm so sorry.

Do you mean that you took one run of Cipro as a perscription, or do you seriously mean you only took a single dose?

Did they warn you about the known side effects involving tendon damage?

rewgs3• 8 years ago

A single dose. I felt the effects about an hour afterwards -- I clearly remember all of my joints feeling way too hot, and my Achilles's tendon (which I later learned is one of the more common sites of injury due to Cipro) felt incredibly weak. My anxiety sky-rocketted, I was sweating profusely. My body clearly hated the drug.

I called the doctor and they advised that I stop taking it immediately, but clearly the damage was done.

I had no idea about any of the side effects. I was just a kid so I wasn't yet in the habit of researching drugs or (stupid!) even looking up which side effects are signs of a serious reaction. All I knew was I had a bacterial infection, had been given antibiotics a couple times before in my life without issue, so why worry?

I guess it's technically on me to read the literature, but again...I was a kid. I think this was the second time I'd ever seen a doctor without my parents present. A drug this serious should require a stern talking-to by the doc and written consent/understanding of the risks by the patient before it's prescribed. I know that had I been warned, I would've said "fuck no." Sure, I was a dumb kid, but even a dumb kid who is essentially a serious athlete (one who just happens to use really small muscles with an instrument rather than big ones) would've known that "irreversible nerve damage" isn't worth tempting fate.

There isn't a day that goes by without me regretting taking that pill. Again, I don't know the full extent of the damage, but I know that at least it ruined my career just as it was getting started.

Edit: What's really fun is that I may still be seeing new symptoms. I recently suffered Sudden Hearing Loss -- while I'm no longer a professional guitarist, I am a pro musician -- and of course the cause couldn't be pinned down (I know it's not due to loud noises, since you won't meet anyone more careful with their ears than me). This article stating that these drugs may be ototoxic is quite terrifying. My ears have been sort of deteriorating over the last year or so, and if it's Cipro continuing its reign of terror, I don't know what I'll do. File a lawsuit, maybe?

manuisin• 8 years ago

I'm sorry that was your experience, but that's just one side. 4 doctors told me to take it less than a month ago.

Cipro saved my life.

My only side-effect is that it left me with not being able to eat anything heavy. I can only digest something like Soylent now, so happy that Soylent is a thing otherwise life would suck.

sgift• 8 years ago

And, unfortunately, both results are in the expected spectrum. They may even be at the same time. The list of side effects on the medications I have to take is longer than my arm written in a small font and I hope every day that I don't start to get any of them. I still take the medications, because when I don't do it my life gets bad pretty fast, but the thought always lingers "what if ..?"

rl33• 8 years ago

My only side-effect is that it left me with not being able to eat anything heavy. I can only digest something like Soylent now, ...

Glad it saved your life, however I must say that's a pretty severe side effect.

rewgs3• 8 years ago

I mean...what? You seem pretty nonchalant about literally only being able to digest liquids.

rl33• 8 years ago

Cipro robbed me of my career, my identity, and my 20s. I've never quite fully recovered or found a job I loved as much/was as good at as playing guitar.

That's horrible, I'm sorry.

Have a similar story to yours but early adolescence. More severe, but full physiological recovery after years. The life knock-on effects however remain, and those can hurt more than any physical pain.

Having your life ruined by a rare side effect—especially one that's not outwardly visible—is like being run over by an invisible bus. You're road kill, and yet nobody gives a shit, just another statistic. Worse yet is when you're met with incredulity by the bus driver (in this case medical professionals) as to whether you were actually run over in the first place.

Without going into too much detail, I had a physician refer me to a pediatric psychiatrist on the basis that I was somehow imagining my symptoms, only to later to be completely vindicated by hard diagnostics proving severe, life-threatening illness. It disturbs me to think of kids that weren't as lucky.

fredley• 8 years ago

Man I got off easy. I had an allergic reaction to Cipro, when I was in a state that I could barely move. It's been 3 years now and I've had nothing serious happen since then. I'm pretty scared though.

novon• 8 years ago

Same sad story here, 2 doses of Cipro and joints were gone for 6 months. Antioxidants and topical magnesium oil helped. What a nightmare of a drug.

delbel• 8 years ago

this article isn't about antibiotics, it is about a specific class of antibiotics called fluoroquinolones. This overly broad simplification, it's like saying all cars are bad because one manufacturer's specific line of cars is prone to a failure. That doesn't mean we stop driving all cars. We address that specific manufacture and specific line of cars.

wemdyjreichert• 8 years ago

Would be like headline reading "cars exploding when bumped" rather than "ford pintos exploding when bumped"

thaumasiotes• 8 years ago

If there's any class of medications you'd expect to be generally problematic, it'd be "antibiotics". They have the name because their purpose and observed functionality is to "just generally kill stuff".

genomer2• 8 years ago

The article didn't focus solely on quins.

An example of a different class: "Researchers have shown, for example, that aminoglycoside antibiotics can cause deafness by damaging mitochondria in the hair cells of the ear."

More general statement: "They reported that antibiotics in several classes triggered oxidative stress — a build-up of reactive, oxygen-containing molecules — in mitochondria, inhibiting their function across a range of mammalian cells, as well as in mice."

I interpreted the article as saying that quins are the most obvious example of antibiotics causing harm, but one example for where they cause harm (mitochondria) is a problem shared by other antibiotics. Unfortunately there isn't a test for evaluating mitochondrial damage in the body. Since we can't test, we don't know the real extent of damage done by any antibiotic to human cells. More research is needed.

ggm• 8 years ago

Due to a toxic reaction I'm advised to avoid rulide class antibiotics. When I mention this to medical people they often frown, once they've gone into the web equivalent of the PDR. They seem to take longer to find something to use.

My take-away from this, is that once you know you can't take a family of antibiotics you've "walked off the reservation" for standard treatment guidelines and made their job harder in ways which can potentially go to equally bad outcomes for you. Do they have a competent alternative? Whats the implications of moving up the drug "defcon" chart to something stronger?

Its not win-win to know you can't take a drug, its possibly lose-lose.

Not that there is an alternative. I'm just saying, that empowerment with knowledge you can't take eg Cipro has a consequence bigger than just "don't take Cipro"

kpozin• 8 years ago

Be aware that not having a reaction the first time(s) you take fluoroquinolones is no guarantee that it won't happen later.

I had had several exposures to levofloxacin (a very bad ear infection) and ciprofloxacin (post-surgery prophylaxis) several years apart and was fine. A few months after that latter exposure, I took one dose of levofloxacin for an apparent infection, and within less than a day I started experiencing pain in one and then the other ankle. It was very painful to walk for about a month, my ankles were creaky and sore, and there was transitory soreness in my wrists as well. The acute pain subsided after that month but it took about five months total before my ankles were completely pain-free.

Don't use these antibiotics except to treat something that will kill you otherwise.

hycaria• 8 years ago

Still not enough for MDs to keep fluoroquinolones for threatening conditions or resistant infections it seems. Incredible. Tons of molecules can and SHOULD be used first in most cases described here. It's just so bad. Someday we will have nothing left against bacteria and this will be entirely deserved.

rl33• 8 years ago

A family member of mine ended up with permanent peripheral neuropathy in their feet within days from taking a fluoroquinolone-class antibotic for something that wasn't even that serious. They were old enough that remyelination wouldn't occur, and it didn't. Still can't feel their feet to this day, and it happened a decade ago.

Funny enough I was prescribed a fluoroquinolone a few months back without even asking; the condition was so benign that using it was left up to me as optional. The risk calculus there was unfathomably bad, and suffice it to say I didn't take any.

growlist• 8 years ago

My opinion: these drugs are dangerous, and should only be used as an absolute last resort. I had the common reaction of damage to connective tissue - my tendons became painful and weak all over my body, to the point that at one point it was difficult even to walk. I couldn't sit in a chair because the pressure on my hamstrings was so painful. Also my skin thinned all over my body to the point where I was nicking through the skin on my palms every 5 minutes whilst gardening. Thankfully my tendons and skin have recovered somewhat, but are not what they were. I also have chronic reflux issues that came on at the same time, and which I strongly suspect are related to Cipro. I'll repeat my advice to add to all the others: do not take these drugs unless the alternative is horrific!

billybob0982• 8 years ago

The article doesn't even mention gut flora. Aren't they considering that the systemic degeneration is caused by the damage the antibiotics inflict to the gut microbiome?

genomer2• 8 years ago

Directly from the article.

"Until recently, investigations into the side effects of antibiotics have focused on how the drugs disrupt the human microbiome, says James Collins, a medical engineer at the Massachusetts Institute of Technology in Cambridge."

billybob0982• 8 years ago

*barely even mentions

andrewl• 8 years ago

I won't take any fluoroquinolone antibiotics. I had terrifying mental effects after one dose (not one course, one pill) of Avelox (Moxifloxacin). Fortunately I had no permanent effects. I had a similar, but less severe, reaction to Cipro.

Some time later I rejected a prescription of Levofloxacin, and asked my physician for Doxycycline, which I tolerate well. I discussed it with my pharmacist and she agreed with my decision. She had taken Levofloxacin for a few days three years earlier and it gave her permanent (so far) neuropathy in hip and leg, and balance problems.

This 2016 posting includes discussion of Cipro and other drugs in this class:

https://news.ycombinator.com/item?id=13273770

Here are some relevant articles:

Fluoroquinolone-Induced Serious, Persistent, Multisymptom Adverse Effects. BMJ Case Reports, 2015:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4600819/

Levofloxacin-Induced Acute Psychosis. Indian Journal of Psychiatry, 2008:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2745871/

American Academy of Family Physicians (AAFP) warning:

https://www.aafp.org/news/health-of-the-public/20160727fluor...

avgDev• 8 years ago

I was given cipro 7 years ago at a hospital...instant terrible allergic reaction, rash, flashing lights in eyes and tinnitus.

I was released from the hospital the day after. Nothing reported to the FDA, barely a mention of a reaction in the paperwork. I was too young to pursue any legal action.

Then over the course of 6 months my health deteriorated. Insomnia, joints started to click, got floaters in my vision. Then clicking turned into joint pain. Also, got nerve buzzing, frequent headaches, IBS, frequent heartburn. There was a time when I could not walk for weeks. Doctors would simply give up and give very little help just pain meds. Mayo clinic diagnosed my tendon issues as tendon overuse because I was athletic prior.....

I work now and can push myself to do many things. I manage the issues quite well and I would say it is a bit better than 7 years ago. However, fuck the medical community, I swear I have seen close to 100 doctors over the course of the last few years from Mayo, Rush, Northwestern and more and only two doctors agreed that it could be Cipro. One doctor refused to note it in my paperwork, and suggested to wait it out as it should get better. Later I found out he is an expert witness for pharma....

As someone that has researched problems since I was little.....I just cannot accept that people with a PhD can be that fucking terrible at typing "cipro tendon" into google search bar and reading studies, stories, and the black label. Or doctors are too much in debt and worry about the risk of going against the medical community. I don't know. The system is simply broken, these issues are under reported as symptoms can show up to 12 months after last dose. Doctors don't report shit and won't even ask if you took fqs.

Interesting fact is that many UTIs are treated with fluoroquinolones. 90% of people diagnosed with fibromyalgia( I have received this diagnosis a few times) are women. They also get diagnosed with UTIs a lot more than men.

abdulhaq• 8 years ago

Just for counterpoint, Cf, hlt, kidney tx, amoxicillin, fluclox, gentamicin,azlocillin, ceftazidime, vancomycin, you name it... Loving cipro these days

When antibiotics turn toxic

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