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Long term azithromycin

Immy_6 profile image
63 Replies

Hi,I have just been prescribed azithromycin 250mg (Mon,Wed,Fri).

I would like to know other people's experience on this medication.

I had an open lobectomy (right lower lobe) a year ago. I've had/got pseudomonas, Klebsiella and serratia.

Since surgery I have had constant wheezing, inflamed air way and tightness in my upper respiratory.

I'm asthmatic and bronchiectasis was found in the lobe that was removed.

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Immy_6 profile image
Immy_6
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63 Replies
teddyd profile image
teddyd

Been on it for approx 12 years. Its been a life saver .

Immy_6 profile image
Immy_6 in reply toteddyd

Thanks for the reply. Your answer has helped. Did you still get serious infections while on azithromycin?

teddyd profile image
teddyd in reply toImmy_6

Have had infections and hospitalised ( only once) but day to day activities become much easier. Obviously I am 12 years older and therefore other bits off my body are playing up .On day to day basis I can do most things.

Patk1 profile image
Patk1

You've had a tough time.hope azithromycin helps you.ive no probs with it - I take 2 every day

Immy_6 profile image
Immy_6 in reply toPatk1

How long have you been taking this medication?

Patk1 profile image
Patk1 in reply toImmy_6

Q a few years

Xlizixx profile image
Xlizixx in reply toImmy_6

I only started azithromycin last week.

Xlizixx profile image
Xlizixx in reply toPatk1

Hi, how long have you been taking 2 every day? I am taking one 500g per day and seems to be working so don’t want to stop yet.

Immy_6 profile image
Immy_6 in reply toXlizixx

And how long before the azithromycin kicks in? I'm very wheezy which comes from my throat area. Although I do have asthma and I'm on fostair for that, this wheezing is not asthma in my opinion.

Patk1 profile image
Patk1 in reply toImmy_6

I'd ask for them to investigate Immy_6, for vocal chord dysfunction/ILO= Inducable laryngeal obstruction.Whn it happens,try controlled pursed lips breathing( see aluk website)

Immy_6 profile image
Immy_6 in reply toPatk1

On of the consultants did mention ILO but then another of my consultant said it wasn't that and he put it down to asthma.I'm now going to ask them to look into the ILO or could it be reflux. I've now been on azithromycin for a week (3 times) and Ive not noticed any difference. Maybe need more time on it?

The burning sensation in my throat is getting worse.

Patk1 profile image
Patk1 in reply toImmy_6

Cld be reflux & ilo.my vocal chords close to a pinhole,randomly.i work on keeping calm and controlled pursed lips breathing - it does work.to diagnose,they'll need to look at throat+ vocal chords.I found azithromycin took me 3mths to feel any benefit.i still got a lot of infections,but( except for particularly nasty ones), they didn't last as long

Immy_6 profile image
Immy_6 in reply toPatk1

Thanks for replying, your replies have really helped. I've emailed my consultant on Friday l, so hopefully I will get a reply next week.This wheezing is really getting me down as its been a full year from surgery.

All the specialists expect me to be back running now but unfortunately I can't due the wheezing, tightness in throat/chest and burning sensation in throat.

Patk1 profile image
Patk1 in reply toImmy_6

I've b reading yr bio.youve been through the mill.ru on ppi eg omeprazole, to see if it reduces burning? X

Immy_6 profile image
Immy_6 in reply toPatk1

Yeah, unfortunately it's been really tough, and made worse due to the fact I've now got this wheezing which is stopping me from running etc.

Xlizixx profile image
Xlizixx in reply toImmy_6

Well I found it worked within a couple of days. Using relvar elliptical cause fostair didn't work. I have bronchiectasis and asthma. Why do you think you are wheezy if not asthma?

Immy_6 profile image
Immy_6 in reply toXlizixx

I was on relvar for 5 years and didn't have any issues with asthma although I would take the salbutamol inhaler a few times a week (everytime I went for a run).I don't this wheezing is from asthma because when I take my inhaler the wheezing doesn't go away and if anything gets worse with the fostair. The wheezing also comes and goes during the day and sometimes gets better without me using salbutamol.

Also my last feNO reading back in May 2024 was 15 which was down from 61 (November 2023) but the wheezing was still there.

The consultants felt it was out of controlled asthma.

I'm also taking montelukast and spiriva.

Patk1 profile image
Patk1 in reply toXlizixx

I'm on 250mg twice a day.been on it for years.if it helps,I'd not stop it.i choose to have few days off periodically to take probiotics x

Xlizixx profile image
Xlizixx in reply toPatk1

Thank you Patk1 - I will continue as I'm feeling so much better on them. I've heard you can take them 3 x week. I also take optibac probiotic for people on antibiotics.

Sunshine404 profile image
Sunshine404

I have been taking it for last 2 months and i still got an infection which initiated by a viral infection though. Other people on the forum include taking it for more than 10 years and they have been fine. I hope that it works for both of us.

Best wishes

Sunshine 🌞

Immy_6 profile image
Immy_6 in reply toSunshine404

Thanks for replying. You are right regarding some are taking it for 10 years plus and it's a game changer for them. Hoping it works for both of us. 👍

Xlizixx profile image
Xlizixx in reply toImmy_6

Can you take zithro every day long term or 3 x week ?

Immy_6 profile image
Immy_6 in reply toXlizixx

3 times a week.

Xlizixx profile image
Xlizixx in reply toImmy_6

Thank you Immy. I think as I’ve only taken it a few days and my chest and breathing is so much better I might carry on for 14 days and gradually reduce to 3 x week.

Xlizixx profile image
Xlizixx in reply toImmy_6

Also I’ve had many antibiotics over the last 6 months before I knew I had bronchiectasis, most of the time doc didn’t give me a long enough course so it just came straight back. I’ve also had clarithromycin, another good one from the same family as zithromycin but I have to say it’s been a game changer for me. Also like you I take montelukhast, not sure whether it makes a difference or not. Hope the zith works for you.

sassy59 profile image
sassy59

Hubby Pete wouldn’t be without it as it’s saved him from having so many chest infections. He has COPD, sarcoidosis and asthma. X

rosco59 profile image
rosco59

I’ve been taking it for 18 months and it has vastly improved my quality of life. I’ve not had an infection since starting it. I take it three times a week. Hope it works for you.

B0xermad profile image
B0xermad

Hi I have been on it 6+ years and before I was having lots of chest infection and pneumonia and pleurisy but now very rarely have infection. I have bronchiectasis asthma and copd for 10yrs without azithromycin 500mg 3 times a week it would be detrimental to my health

Immy_6 profile image
Immy_6 in reply toB0xermad

Great news that it's worked for you, hopefully it works for me so I can get back to some normality.

B0xermad profile image
B0xermad in reply toImmy_6

I really hope so,it takes a couple of months to get some real benefits but stick with it

Spacecat1 profile image
Spacecat1

Hi hope you are well. They found pseudonyms in my lungs I am on same meds as you. Same days. Have been on. Meds for over 2 years and I feel good

The only annoying thing is if I have a chest infection I go on to antibiotics I have to stop pseudonyms tabs x

PaulineHM profile image
PaulineHM

Hello, sorry to read about your health issues.

I have Asthma and COPD and have been taking Azithromycin alternate days for 8 years. Quite honestly it hasn’t done anything for me, although I know many folk who feel they have benefited from taking it.

We are all so individual so I would recommend you trying it, especially through the coming wintertime - what do you have to lose ? Let us know how you get on won’t you ?

Go well,

Pauline

Immy_6 profile image
Immy_6

Sorry to hear it hasn't worked for you and thanks for your advise. I think there will be medication for bronchiectasis that might be released in the next couple of years.I will keep you updated on how I get on with azithromycin.

LissacFrance profile image
LissacFrance

My wife has had Azithro for last 4-5 years. Occasional infection requiring Amoxicilin bit much better on the whole. Azithro works as an anti-inflammatory, hence its use for bronchiectasis. Do try to take as much exercise as you can. My wife aims for 10,000 steps per day, about 3 km. We also play table tennis as the arm movement helps to loosen the muck. Good luck and take care, Chris.

Immy_6 profile image
Immy_6 in reply toLissacFrance

Hi LissacFrance,Thanks for the reply it's been really helpful.

armstrong2 profile image
armstrong2

hi immy l also had a lobectomy upper right lobe taken out by v a t due to cancer but fortunately no medicines after op but since op l am experiencing pain and spasms in lower right lung that has been 3 yrs since op ...l am still having consultations every 6 months and c ts to be on the cautious side .l also have moderate copd which isnt helping with breathing problems and just getting over pnuemonia hasnt helped ....breathing problems l think goes with the op we have had ....l wish you well and take care of your self

GemGem47 profile image
GemGem47 in reply toarmstrong2

hi

I’ve been on it for 4years it’s a great help

Immy_6 profile image
Immy_6 in reply toGemGem47

Excellent news GemGem47. That really helps hopefully that will be the same for me.

Immy_6 profile image
Immy_6 in reply toarmstrong2

Hoping everything works out for you. Take care of yourself.

Danielmystar profile image
Danielmystar

Hi ive been on it a few years fir me its made a big differance I've only had one infection which I needed to be hospitalised with other than that I've been ok .

Immy_6 profile image
Immy_6 in reply toDanielmystar

Hi Danielmystar,Thanks for replying, great help. Hoping it will help me for years to come.

Mooka profile image
Mooka

it gave me stomach pains last time I was on it. My doc also told me it reduces the effectiveness of clarithromycin. I take co-trixamole three times a week instead. Maybe worth a go if you don’t get on with azithromycin I hope it helps u.

Immy_6 profile image
Immy_6 in reply toMooka

Hi Mooka,Thanks for the advice, much appreciated. Does the co-trixamole help reduce infections as well? And how long have you been taking it 3 times a week?

Mooka profile image
Mooka in reply toImmy_6

Yes co-trimoxazole is another antibiotic. I’ve been on it before but stopped when I wasn’t having any infections then I had three in six months. I started in June last year and haven’t had an infection since. I do nebulise another antibiotic twice a day for the dreaded pseudomonas and I’m immune suppressed.

Immy_6 profile image
Immy_6 in reply toMooka

Yeah I was inhaling colomycin via a nebuliser for about 7 months for pseudomonas after surgery.

Digger0 profile image
Digger0

Been on it for 4+ years and it's been fine. No more really fruity chest infetions!

Immy_6 profile image
Immy_6

Hi Digger,Excellent news, exactly what I'm hoping. Thank you.

helenlw7 profile image
helenlw7

I have asthma, bronchiecstasis and very recently diagnosed ILD. Ive been on Azithromycin for 8+ years as a prophylactic. I’m now on 500g 3x a week because that’s supposed to help asthma but I haven’t noticed any difference. I’ve came off it twice, once right at the beginning because my lung consultant said people didn’t get chest infections in the summer, but I got the worst one I’ve ever had, and the second time at the end of last year because I had a change to my rheumatoid arthritis meds, and you couldn’t take the new one with Azithromycin because it causes heart and lungs issues. The new RA med worked really well, but I ended up in hospital for 7 weeks with pneumonia because I couldn’t take Azithromycin!

I haven’t had any side effects from the Azithromycin and it’s very effective, in my case, in stopping chest infections.

Alberta56 profile image
Alberta56

I've been on it for 4 years and only had one infection in that time. A great improvement on pre Azith days.

Karenanne61 profile image
Karenanne61

I'm on azithromycin thrice weekly, all year round. All good, no serious chest infections or negative side effects.

Lutontown profile image
Lutontown

As I am prone to getting mouth ulcers, I found this antibiotic gave me a terrible sore mouth.

Numptybrain profile image
Numptybrain

I’ve had same infections as you plus pneumonia and sepsis a couple of times, I have asthma and bronchiastasis with bilateral pleural effusion’s caused by autoimmune disease. I’ve been on it for 2 years, still get infections but haven’t had pneumonia or sepsis whilst I’ve been on it, thank goodness.

Take care

Wendy xx

starskyd profile image
starskyd

Hi Immy_6, I was on Azthromicin 3 X a week as you say. It worked very well for me in regards to infections and I've been off it 2 years still no infections, however it did give me tinnitus, which is a side effect . Something to just think about. Good luck with it all though

cathykay profile image
cathykay

hi I’ve been on these for a few years now it helps me from getting reoccurring infections I have last stages of COPD emphysema for 14 years now, but since being prescribed these I get less infections so no need to use my rescue packs, they are a god send. Hope this helps you, take care x

Popsicle57 profile image
Popsicle57

I’ve been on azithromycin , mon, wed and fri for 12 years. When I get a flare up ( I’m on it for asthma and a prophylactic against chest infections) or on the very rare occasion that I now get chest infections, I’m asked to stop the azithromycin, and take another antibiotic plus prednisolone, when the course is finished I restart the azithromycin. It’s been a game changer in reducing the amount of chest infections I was having. I E not suffered any sudden effects to azithromycin the 12 years I’ve been taking it.

Immy_6 profile image
Immy_6 in reply toPopsicle57

Hi Popsicle57,Thanks for getting in touch.

Wow that's amazing. Music to my ears. Hope you carry on with hardly any infections. 👍

mwalker23 profile image
mwalker23

I have been on it for just under 2 years now. No infections since then.

Immy_6 profile image
Immy_6 in reply tomwalker23

Excellent news. Long may it continue. 👍

Germantara profile image
Germantara

Sorry can't help on that post I've never had that one hope you get some answers

gardeninglady profile image
gardeninglady

Hi, I have Bronchiectasis and trialled taking Azithromycin last winter 3 days a week, 250mg. I have had a break from it May until now. In all that time I had no chest infections, whereas the previous winter I had 2. However, I haven't had any viruses with colds, coughs, sore throats etc. The real test will be when I catch a virus aas that is when I usually get a chest infection. So I am hopeful that it is helping. I didn't appear to have any side effects or further medical issues from taking it. I am about to now trial taking it 250mg every day to see if it could reduce the amount of mucus my lungs are producing on a daily basis and therefore the amount of time I spend coughing it up and blowing my nose. It is like having a permanent cough and cold. I do hope that you find it helpful to improve your quality of life.

Kiwiflyer8 profile image
Kiwiflyer8

Hello

I’ve been taking Azithromycin 250mg three times a week for two and a half years now.

I’ve only had 3 flare ups with my Bronchiectasis during that time which I think is pretty good.

The only negative thing for me is that the Azith gives me diarrhoea about an hour after I’ve taken it!!

(Small price to pay for keeping reasonably well though.)

Good luck!

Symes profile image
Symes

Been on azithromycin myself for 11 years now. Like you I take it on Monday, Wednesday and Friday. I have asthma, Bronchiectasis and COPD. It’s been a life saver for me.

Immy_6 profile image
Immy_6

Thank you everyone for replying. I have learned so much.So I've now been on the azithromycin for almost a week. I started to notice the wheezing getting less at first but now it's back and it's upper respiratory (throat) this is also where I also get a burning sensation in my throat especially in the morning.

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