Stopping Azithromycin after 25 years

[cmpfhorn]

Anyone else been told to stop their alternate day dose of Azithromycin due to colonisation of Mycobacterium Abscessus in the lungs?

I stopped taking it 14 months ago and have had a rough year with my chest. No hospitalisation required but every time I've taken my rescue antibiotic Ciprofloxacin, the infection hasn't completely cleared. Generally feel ill and worse than I did before stopping the regular Azithromycin.

I understand the reason for being told to stop taking it as the Mycobacterium Abscessus has limited antibiotics available to treat it (one of which is Azithromycin). But I think it's the Pseudomonus A. which is causing me to feel so constantly ill. Just don't see the logic in sacrificing my current health for a what if scenario in the future with the Mycobacterium Abscessus which may never cause any issues.

Sorry for the super long post!

Chris

[TerryBun Administrator]

I haven’t been told to stop Azithromycin, I’ve been on it for around 20 years ( lost track of when I started). For around the last 15 years I’ve been taking it only twice a week (Mon/Thu), as at one point there were concerns about hearing loss.

I suppose some doctors have different view points and of course all of us with PCD have it to varying degrees and respond to treatments differently as well. Have you mentioned your concerns about it with your specialist, especially as you’ve been having a rough year?

I hope you manage to get it sorted and begin to start feeling better than you have been.

[cmpfhorn in reply to TerryBun]

Thanks for your reply - I appreciate your thoughts.

I have been in touch with my PCD nurse each time I've needed my rescue Ciprofloxacin (6 times this past year). I have a face to face appointment coming up soon so I will be sure to let the hospital know how much more difficult than usual it has been. I'd hope they might let me take my own risk of going back on the Azithromycin as it feels like it should be up to me to weigh up the pros and cons.

Some of these Myco bugs do seem quite worrying however...

[FrankiePugg]

Thank you for this post. I will have to start have regular blood tests as I started this medication in January this year. How often would I need blood tests?