If you have EDS or another connective tissue disease, please be aware of the risks involved with antibiotics from the fluoroquinolone family. They have a black box warning for a reason, and are particularly devastating to those of us with Ehlers Danlos. They should be an absolute last resort - ThreadSky

broadwaybabyto.bsky.social • 13 hours ago

If you have EDS or another connective tissue disease, please be aware of the risks involved with antibiotics from the fluoroquinolone family.

They have a black box warning for a reason, and are particularly devastating to those of us with Ehlers Danlos.

They should be an absolute last resort

Comments

this1wierdgirl.bsky.social•11 hours ago

(it's a connective tissue disorder, ct diseases are like lupus, rheum arthritis etc)

broadwaybabyto.bsky.social•11 hours ago

Oh ffs. Thank you. Hopefully people read this comment as I don’t really want to delete and redraft. Sigh. Shouldn’t post when half asleep.

this1wierdgirl.bsky.social•10 hours ago

eh happens all the time, kind of wish they'd rename one category or the other so they're not so similar looking.

maggiekpaints.bsky.social•13 hours ago

I had no idea. theres a genetic history of eds in my family and i probably have it but was never tested. Thanks for the heads up!

tyrotcm.bsky.social•13 hours ago

EDS is massively under diagnosed. Better safe, for sure.

maggiekpaints.bsky.social•12 hours ago

Yeah ive taken cipro a few times for utis but will ask for other options going forward for sure.

broadwaybabyto.bsky.social•10 hours ago

Definitely better safe than sorry! Even without a confirmed diagnosis, you can always reference family history and ask if there’s an alternative Antibiotic (there often is)

skyyks.bsky.social•7 hours ago

📌

delightw2023.bsky.social•10 hours ago

Also any sulfa drugs are a big NO for ppl with Lupus. They are known to kick off flares (they do for me). This would include Bactrim one of the most commonly prescribed drugs for UTIs. Not everyone will have a problem but be aware.

dollythedino.bsky.social•10 hours ago

Thanks for the info ... I haven't been dx yet and another reason to know for sure.

finiums.bsky.social•13 hours ago

Oh my god thank you for this warning! How horrifying

broadwaybabyto.bsky.social•10 hours ago

You’re welcome! I feel it’s still prescribed too quickly considering how serious the complications can be.

criticalvibes.bsky.social•9 hours ago

Thank you for sharing this. It’s awful what we don’t know or under about the potential side effects of medication.

rp-vb.bsky.social•10 hours ago

📌

broadwaybabyto.bsky.social•11 hours ago

Correction connective tissue disorder (ie EDS or Marfans). Apologies!

tapati.bsky.social•9 hours ago

Not safe for heart patients either.

ericasinthegarden.bsky.social•6 hours ago

📌

eccentriccatlady.bsky.social•12 hours ago

I have EDS and had never heard this before. Thanks!

broadwaybabyto.bsky.social•10 hours ago

You’re so welcome! I found out the hard way so try and mention it every so often for those who don’t know.

sallyannemarch.bsky.social•5 hours ago

They don't check either - I was given it in hospital, I was puzzled as I had not heard of the nickname (cipro) they gave it, so asked for full name and checked it, then told them to tell the dr that it was contraindicated, they changed it the same day "Oh yes, so it is, this should do instead"!

gatorpond.bsky.social•10 hours ago

i wonder if sensitivity to antibiotics in general has something to do with my connective tissue disorder (no one in my state dx's eds ugh) bc some are fine but the last time i took azithromycin i was literally unable to get out of bed for nearly 2 weeks from a sudden uptick in pain + stomach issues.

authorcaseywolfe.bsky.social•13 hours ago

I swear, the quinolone family is ROUGH. It can activate a lot of hidden health issues or interact in very weird ways with certain conditions. My mother has a rare blood disorder - TTP - and the hematologist is almost certain that was the cause of it getting set off. Almost killed her.

broadwaybabyto.bsky.social•10 hours ago

I’m so sorry. I did a month on them via IV when my hysterectomy was botched… it did not go well. Now I always ask for an alternative (thankfully there usually is one, but you have to self advocate)

iloy.bsky.social•9 hours ago

📌

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