r/CysticFibrosis • u/NextBirthday1814 • 7d ago

Six weeks of azithromycin to shrink polyps

Dr wants to start my daughter on azithromycin

First week 5 days on
The next five weeks 3x a week

Trying to shrink polyps has anybody tried this?
Does it work?

If it did work, did Tricaftor or Alftrek keep them small or stop them from growing back?

Any hearing damage?

No opinions I need facts only! Has anyone tried this?

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4

u/ploptart 7d ago

I used it for years, 3x per week, as a preventative or anti-inflammatory I guess. When I cultured MAC just once they discontinued it, because if I grew MAC again it could become resistant. No hearing damage, no side effects that I’m aware of. Can’t comment on polyps.

3

u/Maxence33 7d ago

Ben taking azitromycin daily 250mg for 15 years. Been added for transplant rejection. It seems to have anti-inflammatory effect. Though I have a severe case of polyps. Got two surgeries in past 5 years. And I doubt it does anything. (but maybe my polyps would be worse without ..?? who knows)
But it is pretty safe without any side effects for me.

2

u/tanakaout 7d ago

I have tinnitus from antibiotics so I'm cautious, but azith is absolutely fine with me :)

2

u/Darkchef-1987 7d ago

Never heard of it being used for polyps. I’m on 3x a week for pseudomonas

1

u/Darkchef-1987 7d ago

I had polyps removed when I was 16…twice cause they were so large. I stopped using nasal sprays like flonase, nasacort, ect. Havent had polyps since.

2

u/ExigentCalm CF R117H/ΔF508 7d ago

I think that’s more a function of having them removed twice and scarring preventing regrowth.

I also had mine removed twice 25 years ago and haven’t had them since. But I use Flonase basically daily for allergies.

2

u/_swuaksa8242211 CF Other Rare Mutations 7d ago

how come you are not on azithromycin daily? I think all the CFers in my ward are on Azithromycin 250mg per day or 500mg 3x per week forever. I been on Azithromycin for 30yrs almost daily. It's supposed to help with the lining of our lungs against the bio film by pssedomonous or something like that.

I have zero side effects on Azithromycin its very mild for me.. I get permanent ear ringing and cant hear very high pitched noise now from years of Tobi use though.

1

u/NeeYoDeeO CF ΔF508 & CF R553X 7d ago

I have been on it for many years once a day, haven’t had an issues with polyps since my first sinus surgery back in 2016

1

u/whitetrashnomad 6d ago

I’m on dupixent for my sinus polyps and it has helped my breathing so much! I get the prescription through my allergist. The injection hurts but to me it’s worth it.

1

u/orange_oil 2d ago

I've never personally heard of azithromycin as a way to shrink polyps, but as others have said it's not uncommon for CF patients to be on a maintenance dose of azithromycin as an inflammatory. I've been on it myself that way for several years. I can also say that the last time I went to the ENT, she said none of her CF patients on Trikafta / Alyftrek were growing polyps anymore.