Azithromycin - should I take it? - Lung Conditions C...

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Azithromycin - should I take it?

Eccles44 profile image
39 Replies

I'd like to ask about Azithromycin as a prophylactic. My consultant mentioned this last time if I keep getting recurrent chest infections despite the fact we know I am colonised with Haemophilus influenza which I am normally prescribed Doxycycline for. It never gets rid of it, just dampens it down. I have severe eospinillic asthma, ABPA and Bronchiectasis. From some of the reading I've done and a particular Facebook group I belong to (Lung Matters), it suggests that as azithromycin is one of the big 3 to treat MTN's, it should only be used for that to guard against drug resistance and as it is the last line of drugs available for treating Microbacterium.

I've seen that some of you are already on Azithromycin. Is this for MTN's or are you taking it as a prophylactic? If so, was it suggested by a bronchiectasis specialist? My consultant is respiratory and not a bronchiectasis specialist and I am concerned that taking this step will cause me greater problems down the line.

I'd be grateful for any thoughts or experiences. Thank you.

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Eccles44
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39 Replies
Olivia_ALUK profile image
Olivia_ALUKPartnerBritish Lung Foundation

Hello Eccles44,

Thanks for posting.

We do have a team of Respiratory Nurses on our Helpline, that may be able to help answer your questions and would be happy to discuss your concerns.

We are open Monday-Friday 9am-5pm on 0300 222 5800 (Option 3), so if you are in UK please give us a call, we'll be happy to help.

asthmaandlung.org.uk/helpline

Take care,

Helpline Team

Eccles44 profile image
Eccles44 in reply toOlivia_ALUK

I rang and spoke to a nurse called Jenny. She was so helpful and kind. I'm really grateful thank you.

Alberta56 profile image
Alberta56

i have bronchiectasis and I've been taking Azithromycin as a prophylactic for nearly 5 years now. During this time I've had only one bad chest infection and no side effects. I was reluctant to start it when my consultant suggested it, but after a very bad infection changed my mind. It certainly seems to have knocked Haemophilus for 6.

Eccles44 profile image
Eccles44 in reply toAlberta56

Hi Alberta I'm glad azithromycin has worked for you. I've read through all the comments here and I think I definitely need to give this more consideration. Thank you for letting me know that it's worked so well for you. Could I ask do you use hypertonic saline at all?

Alberta56 profile image
Alberta56 in reply toEccles44

I don't use hypertonic saline. No-one's ever suggested it.

Eccles44 profile image
Eccles44 in reply toAlberta56

Perhaps it's not necessary if the azithromycin is working well.

O2Trees profile image
O2Trees

Hi Eccles - I can only give you my experience with prophylactic azithromycin, i.e. 250 x3 weekly (I know some here take 500mg x3 weekly). I have asthma, copd and secondary bronchiectasis, the latter not causing me much trouble. I was getting bacterial infections which were progressing to hospitalisations for double pneumonia and respiratory failure, the last one in 2018. They were terrifying.

Azithromycin was suggested to address these severe infections. I too was wary of taking it but eventually succumbed. Now been on it for about six years and have not had a lung infection since the two hospitalisations in 2018. (Touching wood as I say this as I know that any time I could go down with an infection!)

I have all my vaccinations including one against pneumonia which is often described as a lifetime one but Ive already needed two! I also shield myself against infection by in particular not going into crowded spaces and keeping a couple of metres away from friends and family especially in winter and educating them about my condition. Lots of those on prophylactic azith take an azithromycin "holiday" in the summer months which helps to avoid becoming immune to them.

So I see azithromycin as one of several tools to keep myself well. From my own experience I can recommend it but I'm not a medic, and you will make your own mind up. But many here do take it as you say, and you should get lots of opinions to help you decide, besides contacting the helpline as suggested above. Good luck :)

Eccles44 profile image
Eccles44 in reply toO2Trees

Hi O2Trees It sounds as if azithromycin has been fantastic for you and made such a difference. Although I am colonised with heamohophilus (?) I haven't been that ill with it. Each time I take Doxycycline and it quietens it down. I haven't had pneumonia or been hospitalised because of chest infection so this makes me wonder if I'm at that stage yet to consider taking it. I see here that so many of you have found it to be a lifeline and I'm so glad for you that it has made such a difference. Can I ask do you use hypertonic saline or saline nebulizers? I don't currently and I'm thinking perhaps that's where I should start for now. As all though I get recurrent chest infections they don't make me terribly ill. It's so hard to know what is the right thing to do. Thank you for replying and telling me your your experience.

Patk1 profile image
Patk1

Many of us take it as a prophylactic as its both antibiotic+ anti inflammatory for lungs.

Eccles44 profile image
Eccles44 in reply toPatk1

Hi Patk1 reading all your replies has made me realise that I really need to think about this carefully. Thank you

garshe profile image
garshe

I take Azithromycin 3 times a week for my Copd ..still get occasional infection but haven't been hospitalised thank goodness. Keep safe xxSheila 🙏

Eccles44 profile image
Eccles44 in reply togarshe

Hi Sheila, thank you for telling me your experience. It's so good that it's working so well for you. I need to really reconsider. I'm saying my chest physio next week so I will discuss it with her. Thank you and stay safe too, Sue x

garshe profile image
garshe in reply toEccles44

Good luck xx.Sheila 👍 💓

Eccles44 profile image
Eccles44 in reply togarshe

Thank you xx

rosco59 profile image
rosco59

I take Azithromycin 250mg three times a week to help control my Bronchiectasis. I also have Ulcerative Colitis so was quite wary of taking a long term antibiotic, but this regime has kept me well with no infections since I started taking it two years ago following multiple chest infections. I hope this helps. Good luck.

Eccles44 profile image
Eccles44 in reply torosco59

Hi Rosco59 It's great that it has been so good for you and that it didn't interfere with your colitis. So many of these drugs treat one thing and cause other problems it seems. Thank you for taking the time to reply and letting me know your experience. I will be thinking about this carefully.

MoyB profile image
MoyB

Prophylactic azithromycin has been a game changer for me. Apart from COVID related chest infections I've had none for the three years I've been taking it!Before that I was having 3 or more infections a year .

I have chronic asthma with fixed airways disease and Bronchiectasis.

Xx Moy

Eccles44 profile image
Eccles44 in reply toMoyB

Hi Moy so glad it's been such a great help to you. Can I ask do you use saline nebulizers as well?? And does the azithromycin make a difference to sputum amounts too? I have stuck my head in the sand for years and now I need to decide what's the best thing to do. It's so helpful to be able to ask everybody here. Thank you! Sue x

MoyB profile image
MoyB in reply toEccles44

My resp meds are: Relvar and Incruse inhalers once a day; ventolin as required; montelukast x 1 per day; carbosysteine x 2 x 3 times a day; azithromycin x 1 x three times a week.The carbosysteine keeps mucous under control.

I have a small travel nebuliser that I have used occaisionally when my cough was bad during my three COVID episodes.

Information about what others find helpful has been useful to me as I have been able to research things and then have a discussion with my consultant about them.

Xx Moy

B0xermad profile image
B0xermad

Hi yes mine was requested by respiratory consultant and for bronchietasis,I also have copd and asthma it has lessened the exacerbations by half and I have been on it 8yrs

Eccles44 profile image
Eccles44 in reply toB0xermad

Hi Boxermad It's obviously made a big difference to you which is great to hear. I have a lot of thinking to do.

Lfcpremier profile image
Lfcpremier

Hi. I have Bronchiectasis, 13yrs now & initially was suffering constantly from infections. I was put on Azithromycin as a prophylactic, more thann 12 years ago & ir has helpedd a lot. Good luck!

Eccles44 profile image
Eccles44 in reply toLfcpremier

It's great to hear from someone who has been on it for so long. Do you ever take holidays from it? It's obviously worked for you really well. Do you use saline nebulizers as well? I need to consider the treatment options. I make a decision but I'm finding it so hard. Thank you for replying.

Lfcpremier profile image
Lfcpremier in reply toEccles44

Yes 2x daily, & carbocisteine.Unfortunately the last 12 months pseudomonas seems to be featuring more. Its not really problematic but the consutant has put mw on a trial of nebulised colomycin to try to limit it.

Takes a lot of time doing both but i am getting used to it.

I never have a break in azithromycin even if im on another antibiotic.

Best of luck. X

Eccles44 profile image
Eccles44 in reply toLfcpremier

I've been anxious not to start nebbed saline but I think I really have to now. The time this all takes feels like such an imposition but then I have to change mindset don't I. This is a choice to stay well.I hope the colomycin works for you and knocks them out. Best of luck to you too and thank you x

LissacFrance profile image
LissacFrance

My wife as bronchiectasis and has been taking Azithro for te last 5 years. This has made a big difference, along with physio 3x per week and lots of exercise. She`s very pleased with herself as in December she exceeded 9,000 steps every day! WE both ad Covid back in June and I was affected more than she was, but I suspect we are both still feeling the after effects. We both have colds at the moment which are dragging on far longer than usual. Take advice from your consultant, Chris.

Eccles44 profile image
Eccles44 in reply toLissacFrance

Hi Chris it sounds as though your wife is doing amazing and it must be such a relief to have found something that's made such a difference. I have probably spent too much time on Google. If I felt ill and had been hospitalised then it would give me the push to take it but I just get more and more breathless and touch wood haven't become very ill with these infections yet. Some of my worry is that this is one of the best defences left for serious infections and am I at that point yet?

gingermusic profile image
gingermusic

I have been taking Azithromycin for about 3 years now not to sure why it was prescribed but I taken it three days a week and have not had an infection since. Hope this helps

Eccles44 profile image
Eccles44 in reply togingermusic

Thank you, ginger music it does help to hear everyone's experience with this drug. I'm glad it's making such a difference for you. Thank you for taking the time to reply

Digger0 profile image
Digger0

I have taken it 3 times weekly since 2021 and (touch wood) have not had a chest infection since then. I used to get 6+ really fruity chest infections that lasted 3-4 weeks before I was diagnosed with bronchiectasis and put on Azithromycin.

Eccles44 profile image
Eccles44 in reply toDigger0

Hi Digger() It must be a relief that it has made such a difference. Thank you for telling me your experience. I have some thinking to do.

Popsicle57 profile image
Popsicle57

I’ve been taking azithromycin ( 250mg 3x weekly) for 12 years as a prophylactic. No side effects, and very few chest infections .

Eccles44 profile image
Eccles44 in reply toPopsicle57

I'm so glad it's working for you. 12 years is a long time and it's reassuring to know that you still have had no side effects and all that length of time. Thank you for letting me know. It so helps to be able to ask you all your experiences, I find this such a lonely disease to cope with.

Popsicle57 profile image
Popsicle57 in reply toEccles44

I totally agree, gather as much information as you can from people’s experience. Azithromycin is a front line prophylactic( there are others). Wishing you well, and you’re doing the right thing, gathering information from those who have travelled this path before you x

Eccles44 profile image
Eccles44 in reply toPopsicle57

Thank you Popsicle I can't tell you how much I appreciate it. I only found this forum in September and I'm learning so much. The support everyone gives each other is brilliant. All the best with your journey x

peege profile image
peege

I've been on Azith 250mgs Mon Wed and Fri from November to April. I'm delighted to say the in the 4-5 winters I've been taking I've had only 3 infections (2 in 2023). The only reason I'd ask for an alternative prophylactic antibiotic is if I had a heart condition.

Eccles44 profile image
Eccles44 in reply topeege

Thanks Peege, aim currently waiting for a 24 HR tape for my heart. Been experiencing abnormal high heart rates. So that's another thing to look into 🙄

Lfcpremier profile image
Lfcpremier

Hi.. Just re read your post. My consultant is a bronchiectasis specialist & azithromycin was a game changer for me. I suffered with haemophilus often initially. (just to add to my previoys post) 😊

Lfcpremier profile image
Lfcpremier

Hi.. Just re read your post. My consultant is a bronchiectasis specialist & azithromycin was a game changer for me. I suffered with haemophilus often initially. (just to add to my previoys post) 😊

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