Azithomycin

[Morrison10]

I read that some with PCD are on constant 3 day courses of azithomycin. Do you ha ve gaps in this treatment, I.e. 3 days, then few days off. I’ve been on antibiotics most of this year, keep my own including azithomycin, that take as 14 day course. Hope I manage to improve, and could then try the 3 day courses. Thanks

[Chrissie82]

Hi, I take my Azithromycin on a monday, wednesday and a friday so there is a day or 2 in between. I hope it helps x

[Chrissie82 in reply to Chrissie82]

That is what the doctor told me to do, I think thats the norm x

[Morrison10 in reply to Chrissie82]

Thanks Chrissie, will talk to my consultant about this when hopefully got rid of S maltophilia. Got rid of pseudomonas, now have another nasty one. Was going to have iv antibiotics at home after set up at QE Birmingham. As widow live alone, My daughter was going to take me there, as can’t drive after set up and first dose, but my daughter had bad accident, broke leg and ankle, told could be many months before can put weight on it. She lives 25 miles away, single, no children. My older daughter is paralysed by primary progressive MS and cancer, lives alone 70+miles away, no children, husband left her saying couldn’t live with disabled person. Haven’t seen her for months. Sorry for such mournful reply, sometimes I have to face reality. My husband died of prostate cancer, because his PSA reading always very low refused treatment until too late. Everyone I now meet I pass on this warning. Senior clinicians know PSA reading unreliable, but don’t do anything about it. Hope I can save life.

[LD28 Administrator]

Hi, I'm sorry to hear you're having such a hard time. Lots of people take azithromycin on Monday, Wednesday, Fridays. I would be really careful about taking it any differently unless this is on the advice of your doctor, as it can harm your liver etc. If you would like to set up a phonecall private message me your number or email it to me at [e-mail] and one of our volunteers will give you a ring and see how you're doing. Thinking of you. Lucy, Chair, PCD Support UK

[Morrison10 in reply to LD28]

Hi Lucy, thanks for your support, was having issues with my single hearing aid. I’m totally deaf in one ear, experimental grommet years ago was blocked within few hours of being put in, got infected, but had to wait for 7 months for it to be removed, by which time the nerve in ear was dead. The consultation said he’d learnt not to do this again! Though I live alone and am totally reliant on one ear and NHS aid, won’t give me spare. The last one started failing after few years, and the current one is now I think. Not good time, not well enough to go to hearing clinic, even if it’s now open. Thanks again, good luck, now going to Nebulise etc. Jean. xx

[TerryBun Administrator]

Hello Jean

I have been on Azithromycin for around 17 years, initially three days a week, Mon, Wed, Fri.

For at least the last 10 years (can’t remember exactly when), I have been prescribed it for two days a week, Mon and Thu, as I was having hearing issues, so they reduced the dosage.

I also have routine blood tests, to check my liver. So far so good.

Wishing you all the best with your life and health challenges and that you can get on top of things.

[Morrison10 in reply to TerryBun]

Many thanks, think I needed to put my thoughts into writing, release tension, now back in fighting mode! Interesting re Azithomycin, hope I can try it this way soon, have only had it recently as a 10 or 12 day course. Good luck to us all. Best regards, Jean x

[FrankiePugg in reply to TerryBun]

Hello, I would like to learn more about this antibiotic and PCD. Is it serious? Thank you

[mullsand]

My daughter has it every day as prophylaxis for asplenia (250mg rather than 500mg every day just because that’s easier for us)