Has anyone taken Ciprofloxacin for pseudomonas? How did it go?

Posted by picartist @picartist, 3 days ago

I have been watching a lot of Youtube videos on Cipro and the Black Box side effects mentioned are numerous. So far I have not read anything like that here.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

I keep reading online that the tendon issues with ciprofloxen and levafloxin are very rare, yet there are so many on this forum who have had problems. I’m scared to use it😳

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Profile picture for sarahlynn1960 @sarahlynn1960

I keep reading online that the tendon issues with ciprofloxen and levafloxin are very rare, yet there are so many on this forum who have had problems. I’m scared to use it😳

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@sarahlynn1960 I understand your feeling because it is easy to get paranoid when you read these horror stories people have gone through with NTMs, MAC, etc. However, studies have shown repeatedly that people with negative experiences will write more reviews than people who have positive ones. I realize these are not "reviews" like on Amazon but I am presuming the same thing holds true here. I hope I am right.

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Profile picture for sarahlynn1960 @sarahlynn1960

I keep reading online that the tendon issues with ciprofloxen and levafloxin are very rare, yet there are so many on this forum who have had problems. I’m scared to use it😳

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@sarahlynn1960 As @picartist said, those who have no issues are not posting here or elsewhere, they are out living their lives. Keep that in mind as you read about their issues.
I find it more helpful to read carefully on drugs.com or webmd.com and look at the actual rates of verious side effects.

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Good points abt people commenting. I’ll do more research. Thanks!

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Except in the case of Cipro and Levo as they are notoriously problematic. Although some people seem to do ok on them, I will not risk taking either. But I know my body and how reactive it is.

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I just did a quick Google Search on Cipro side effects and it is not bad as far as side effects go. Take a look, it is a quick read and does indicate the percentages of Black Box side effects is low.
https://www.google.com/search

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Profile picture for ja24 - Jeannie @ja24

I had pseudomonas diagnosed in early 2024. It was not treated right away and eventually became colonized. I have had multiple PICC line treatments (usually for two weeks) to administer cefepime to get the flares under control. For the last year I have been nebulizing Colistimethate twice daily (after airway clearance) and it has greatly reduced my pseudomonas exacerbations.

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@ja24 I have also been diagnosed with pseudo minus and have been treat with several drugs. The first was Toby that was fine for about a month but then my Dr at NYU took me off it b
Because it was effecting my hearing. My symptoms did, however, improve while on it. Next a used for about anther month before I started having severe dizziness and joint pains. Once again my symptoms improved Next came Cayston, nebulized 3x per day, 2 weeks on then 2 weeks off. So far after my first 2 wks I’m feeling fine but my mucus production is way up and I have a stuffy nose. Dr said symptoms to be expected. Hope my experience helps you.

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Profile picture for picartist @picartist

@rozie83 I need to rely on Youtube to get details on just about anything. Doctors do not have time to spend on this with patients so we have no other choice other than do our own research on things like side effects, etc.

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@picartist they sure do listen at NJH! The doctors there are amazing!

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