Antibiotics

[Chrissie82]

My consultant at the Brompton put me on a constant 3 day course of Azithromycin antibiotics which I have been taking for a few years now. Does anyone else do this?

[TerryBun Administrator]

Yes, it’s pretty standard for many of us with PCD and people with other certain lung conditions to be on prophylactic antibiotics.

I’ve been on Azithromycin, for around 18 years.

[Chrissie82 in reply to TerryBun]

Thats good to know, are you aware of any side effects such as liver problems or hearing loss?

[TerryBun Administrator in reply to Chrissie82]

Thanks, yes, I have regular blood tests for my liver. Plus for the last few years my Brompton consultant has prescribed me to take it twice a week, on a Monday and Thursday, instead of the usual regime of Monday/Wednesday/Friday, for my hearing. Still seems to be as effective for me just being on the two a week dose, thankfully.

Wishing you well.

[Chrissie82 in reply to TerryBun]

I have noticed my hearing is not as good so I will speak to my consultant to about going down to 2 days a week. Thanks for the tip!

[Floppin]

Yes, I do this, I found without it I'm more prone to chest infections but luckily the few months I've been on azithromycin I've not had a chest infection since, it makes such a difference to me

[FrankiePugg in reply to Floppin]

Can you go to the gym as at the moment, I am staying away from the gym

[Floppin in reply to FrankiePugg]

Not sure - probably dependent on each person. I don't go to the gym but rather walk with my dog or go cycling, both are staying away from people which is fine by me

[FrankiePugg in reply to Floppin]

I appreciate your reply, as I will be starting the azithromycin today. Do you think it’s wise, just to go to the classes in a large room at the gym, but not enter the gym itself? Also, I am suppose to be attending a wedding in March. Should I go? Also, how can I protect myself?

[Ana_Amorim]

Hi, I had another effects - diarreia when I used it...

[Chrissie82]

I am wondering that if I cut the tablets down to 2 a week rather than 3 a week my hearing may improve as its got quite bad lately.?

[TerryBun Administrator in reply to Chrissie82]

Sorry just seen this comment. My hearing did not improve when they reduced my prescription to two Azithromycin a week, but the hope was, it would help with any further hearing loss and also ringing in the ears, which I was occasionally getting.

[C9RPY]

Hi Chrissie. I'm under the Brompton too and have Kartageners etc. I think it's quite normal for hearing to be affected in people with PCD - daily antibiotics or not.

They don't give me any daily antibiotics - and I still need to use hearing aids to feel like I'm a part of the real world.

The consultants that look after my ears don't seem to know what causes it.

[Chrissie82 in reply to C9RPY]

Thank you for the feedback, I hate my hearing aids!!

[C9RPY]

Have you tried private ones? They seem pretty expensive but perhaps they are better

[Chrissie82]

Morning, just carrying on from my earlier message, it sounds like Azithromycin is the most used antibiotic for ongoing use but does anyone else take a different antibiotic that I can look into?

[mahesh77]

I started taking Azithromycin 3 times a week and Colomycin in December after a review of my health in November. I had Klebsiella for the best part of 2 years which I struggled a lot, and even with IV every few months the infection was not getting cleared more than a few weeks. Other oral antibiotics during this time had no effect.

When I started Azithromycin and Colomycin I started to feel some benefits, and was not coughing a lot but I wonder if it was more the Colomycin that has worked as the Klebsiella has since cleared. Since then I'm looking at the effects of Azithromycin, and I still have a fair bit of congestion with it. I have also tried to see how I feel without it for a few weeks, and I am no worse.

I wanted to know from patients experiences do they feel that the Azithromycin helps congestion, or is just there to keep chest infections at bay? My physio I feel is effective as I don't struggle as much but how do I know if the Azithromycin is helping me? I would have thought that the Azithromycin would make me feel less congested but it does not appear to do so.

I have another review with Brompton in a month's time to discuss.

[Chrissie82 in reply to mahesh77]

Thats interesting, I still have a lot of sinus problems whilst taking azithromycin so I will look into Colomycin. Thanks

[Chrissie82 in reply to Chrissie82]

Oh I just googled it, can you get it in tablet form or just i.v?

[mahesh77 in reply to Chrissie82]

Colomycin has been given to me as a nebulised antibiotic that I do after my airway clearance twice a day. I had previously been on Gentamicin but it was not helping treat the Klebsiella. I think Colomycin has worked for me but I imagine it will be given to patients who need it or have re-occurrent chest infections like I had.

[FrankiePugg]

Hello, my name is Nicola. First time on here. Does it work? As I will be going on them to…

[FrankiePugg]

Does it work? Did they find out, what illness you have? 🌺