AZITHROMYCIN: Hello everyone, A few... - British Lung Foun...

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AZITHROMYCIN

RoadRunner44 profile image

Hello everyone,

A few weeks ago I posted on here that a sample of my sputum showed two unpleasant pathogens. I was advised by my Respiratory nurse to start taking my rescue pack of Doxycycline for 14 days then after one week to provide a further sputum sample to see if the pathogens were still present. I had some very helpful replies from you which I was grateful to have and which were very reassuring.

Today I was lucky enough to be invited to the Bronchiectasis Clinic to have a face to face appointment with my consultant. It was a good visit and she has put me on a new medication called - Azithromycin. She said I should take it just three days a week - Monday, ,Wednesday and Friday.

As I know very little about this antibiotic Iwould be so grateful to know if any of you members have experienced using it. As I am partially deaf and waiting for an operation to have my ears drained and grommets fitted I had some difficulty hearing what my consultant said. So, w hy do you think she has prescribed this antibiotic? What is it for? I still have to use Doxycycline if I have a flare up. I would appreciate any information you can give me. Thank you.

RR

103 Replies

I have been taking this for three weeks now. It has been found to help with the symptoms of copd/small airways disease. I don't feel any better to be honest. My cough, though never productive, has become very dry and even more exhausting. Like you I would be interested to hear other's experiences. I will persevere though. Good luck. I hope it helps your symptoms.

Thanks for your reply. Yes, like you i hope others will be able to give us more information on this antibiotic.

B0xermad profile image
B0xermad in reply to Karenanne61

It can take up to 6weeks to fully recover from an infection

Pete has used Azithromycin for some years now and gets on well with it. He has also used Doxycycline as needed and Ciprofloxacin. Read the leaflet that goes with the antibiotics and see how it goes. It’s good for preventing chest infections so might be worth a try. Xx💜💙

RoadRunner44 profile image
RoadRunner44 in reply to sassy59

Thanks Sassy, i will be starting this antibiotic next Monday. I've had some reassuring replies from other members so hopefully it will help me too. Thank you.

sassy59 profile image
sassy59 in reply to RoadRunner44

Thinking of you xxx

RoadRunner44 profile image
RoadRunner44 in reply to sassy59

Thanks for your kind thoughts. X

Hi there

I’m on Azithromycin and have been on it for approximately 2yrs ,since I’ve been on it (touch wood)I’ve not had one chest infection! Previous to that I had regular infections. I’m an asthmatic but it’s the over production of mucus that’s the cause of my problem mild COPD 🙄

Your reply is also reassuring Darceydoo. I assume you haven't experienced any side effects either.

Initially I did get both knees aching which is a side affect. My Resp consultant wanted me to see if I could come off of them not for the aching but to see if by coming off them my condition wouldn’t need them. But after a couple of months it started up again so as he said unfortunately you’ll need to take them .What we agreed was play around with the dose if I need 3 do so maybe take 2 to see how you get on and that’s how I use them. I also take daily Probiotics.

I will be aware of this when I start taking them next Monday. Thanks for the information.

I’ve take it for years and can honestly say I haven’t had the severe infections I used to get since which for me is brilliant.

RoadRunner44 profile image
RoadRunner44 in reply to Gladwyn

Well, it certainly sounds very positive this antibiotic. I hope it works as well for me as it has for you., particularly if it works on the dreadful sinusitis I have too. My consultant seems to think the rhinitis /sinusitis bacteria in my nose is causing the main problem. Maybe the draining of my ears will also help. Thanks for your reassurance.

Gladwyn profile image
Gladwyn in reply to RoadRunner44

I do hope it helps you. My problem is severe COPD and bronciectasis oops spelling , diabetes etc. Do let me know if you find it helpful please. 🍀🦋

RoadRunner44 profile image
RoadRunner44 in reply to Gladwyn

Yes, my rhinitis with the bronchiectasis is playing havoc at the moment. I think theat my consultant hopes Azithromycin can help as its unlikely my ear operation is going to be imminent. I've been waiting two years aleady I certainly will post again if I find it helps. I'm crossing my fingers anyway. Good luck with your COPD. Its an unpleasant disease to have.

Gladwyn profile image
Gladwyn in reply to RoadRunner44

🙏💐🍀

Izb1 profile image
Izb1 in reply to RoadRunner44

I do hope these work for you RoadRunner. I had the same problems with bronchiectasis and sinus's and am so grateful that the recent op I had has worked. The volume of mucus has reduced dramatically and the coughing only a little at night time now. I have waited years for this op so know how you feel x

RoadRunner44 profile image
RoadRunner44 in reply to Izb1

Thanks for your very helpful and understanding reply. I'm crossing my fingers.

Izb1 profile image
Izb1 in reply to RoadRunner44

I will keep my fingers crossed for you too RR x

All quite normal RoadRunner44. Many of us take as a prophylactic to help prevent infections. Some take it all year however many many take it only in winter months. I shall begin my 4th winter of taking it - its only 250mgs 3 time per week - on 1st November through to 30th April. I'm delighted to say Azith has kept me infection free so🤞🤞🤞🤞 for this winter. You're right, if you do get an infection most people have said they stop the Azith, take their usual abs then recommence the Azith.

If you put Azithromycin in the search bar you will find loads of information on dozens of old post - something to read for hours and hours, many posts & replies over the years.

Good luck. Peege

RoadRunner44 profile image
RoadRunner44 in reply to peege

That is so helpful as well as reassuring peege. Will do that too. I feel happier knowing as much as possible about a new drug I have to take. Its all becoming clearer now. Thank you.

Hi RR, 🙋

I have been on this drug for eight years or so. Same as you three days a week. It basically treats a number of bacterial infections. For some people they get a bit of a funny tummy with it. I didn't, but I have developed tinnitus. Good luck with it, if anything is amiss you should check with the clinic. xx 🍀

Hi Cas, Thank you for replying. Once again I'm reassured by the positive answers of our members. It does seem as if Azithromycin works well for most people. The consultant, like you, did mention tinnitus as a possible side effect. However, when did your tinnitus start? Was it shortly after you started taking the antibiotic? Also did you find the tinnitus eventually improved or do you still have it?

I don't remember exactly but it wasn't as soon as I took it. Maybe a year or two later. I still have it. But I am accustomed to it . I have to have grey sound in the background to distract myself from it. But my air cleaner makes enough noise to balance it out. I don't think it will ever go away.

Thank you for your honest reply Cas. Hopefully I don't get tinnitus but all medication has some side effects i know. Like everyone else I will have to work out the positives/negatives of taking this drug. I like to know as much as possible about any new drug I'm given so I am fully prepared should there be any side effects.

Wishing you well Roadrunner and hoping that your care under the bronchiectasis consultant will be a positive step for you xx

RoadRunner44 profile image
RoadRunner44 in reply to CDPO16

Thats very kind of you to say that. Thank you, i hope so too.

Hi, Azithromycin is often used as a maintenance antibiotic. I took it for about four years with no ill effects. I still had to use cipro or doxy if I had a flare up but admittedly they seemed to happen a lot less often. I hope this helps.

Yes you describe it well... a maintenance antibiotic. Thank you for replying Matt.

Hi , Azithromycin is the best medicine to stop lung infection, specially for COPD disease.

Well Im reassured by your reply. Thank you.

Hi. My husband as been on this drug about 4 years. He as never had a chest infection in all this time. We tend to have to replace emergency pack as they go out of date. He was always in and out of hospital with chest infections. The only down side with Alan is that his hearing was worsened by it. The Consultant did warn us about this side effect. Regards

Thank you for replying. The hearing problem is my main concern taking Amitriptylin. I am partly deaf because of the rhinitis and waiting for an operation to drain my ears and have grommets fitted. I think Ill contact ENT to ask advice.

Are you talking about amitriptylin or Azithromycin?

I have posted about both Amitriptylin and Azithromycin and received many helpful replies for which I am grateful.

Sorry for my mistake in calling Azithromycin Amitriptylin. They are both the new drugs Im taking and I typed the wrong medication name in error. Apologies.

Hi I take the same. Monday Wednesday and Fridays. This is suppose to stop any flare ups. To keep you out of hospital. I still had a few. But since Covid. Only had 1 in two years. Social distancing, mask wearing. Has helped to keep anything at bay. Hope they help you?

Thanks for your reply. It seems to be helpful to most of the members on here. Im just concerned about it causing hearing problems for some. I shall contact ENT for further advice.

Yes please ring for advice! But I would have thought it would help clearing all mucus from ears nose and throat.

Hi roadrunner 44,I have been taking azithromycin for 7yrs and its certainly helpful keeping my exacerbations at bay and yes Currently using my rescue pack prednisolone but not the antibiotics this time,I have fewer flare ups since taking it.

You are obviously satisfied with the results of using Amitriptylin too. As you have been taking it for a long time without side effects its reassuring. Thank you.

Yes the only side effect of azithromycin is upset tummy now and again

have been using this for about 4 years now find it very hepful , have a had a few flare ups ,but nothing as bad as i used to have , i would usually end up in hospital before, i still have rescue packs at home and stop azithromycin while taking any other antibiotics

RoadRunner44 profile image
RoadRunner44 in reply to andyrew

The more reassuring replies Im getting makes me confident to start taking Amitriptylin. Thanks.

Hi, i had lots of sputum samples of hymophillus influenzae B HIB in short was in my left lung. Doxycycline would not work for it. Hospital gave me Asythromycin 3 times a week for 9 months and it got rid of it completely. If i do get any more chest infections my gp has a letter to prescribe it in the future. Im asthmatic too all my life. Good luck. Karen Xxxx

RoadRunner44 profile image
RoadRunner44 in reply to Pwkav1

Your reply is really interesting as I have doxycycline as a rescue pack too. What a shame it hasn't worked for you. However, fortunately Azithromycin has stood you in good stead. So you dont take it regularly only if you have a flare up, is that ŕight?

Pwkav1 profile image
Pwkav1 in reply to RoadRunner44

Hi yes im off it now as much better but there for future if need be. Xxx

RoadRunner44 profile image
RoadRunner44 in reply to Pwkav1

Thank you im glad you are so much better now.

Pwkav1 profile image
Pwkav1 in reply to RoadRunner44

Good luck in your recovery. Xxxx

Patk1 profile image
Patk1 in reply to Pwkav1

Hi Pwkav1 i used to frequently get HI infections.not b detected since immunisation against it

Pwkav1 profile image
Pwkav1 in reply to Patk1

I wasnt offered the jab but if comes back will enquire. Hopefully not. Karen. Xxx

Hello Roadrunner, I was put on Azith after a bad flare up in summer 2020. Since then I haven't had any more exacerbations. I have a rescue pack of Doxycycline and Prednisolone (must check it's still in date). I haven't noticed any side effects, though I've had tinnitus for years. My hearing has deteriorated lately, but at my time of life (80) that could be nothing to do with Azith. Best wishes- hope it works for you.

Thank you for your kind wishes. It appears to help most of the members on the forum so hopefully it will work for me too. The hearing is my only concern as I am partly deaf because of the rhinitis. However it hasn't been a problem for the majority of people who have replied. I will, however ask advice from ENT before starting Amitriptylin. Take care and thanks for your honest reply.

Hello RR! All the above! I have been on it for 18 months now and have had just 2 infections (before I was on doxycycline every 3 weeks!). I too have tinnitus, but did before, other than that no side effects :) Hope it helps you as much as others of us seem to have benefitted xx

RoadRunner44 profile image
RoadRunner44 in reply to leo60

Thanks Leo60, Most members have been helped by this drug with very few side effects. Im crossing my fingers it will be the same for me.

It supposedly has an anti-inflammatory effect and therefore may reduce your number of exacerbations. If you do need to take doxycycline again, or any other antibiotic, remember to stop the azithromycin and re-start at the end of the course.I've been taking it for several years. I'm not sure whether it's had any effect really. I still get 2-3 exacerbations per year...sometimes more.

Thanks for mentioning this important piece of information,...stopping Azithromycin if I need to start Doxycycline. Its a good reminder. Most of our members seem to be pleased with the results of taking Azith. and I hope it helps me too. Thanks for your honesty about it not really helping you.

Darceydoo profile image
Darceydoo in reply to stones93

Where you advised to stop Azithromycin when taking another antibiotic?

stones93 profile image
stones93 in reply to Darceydoo

Yes...and then start again as soon as the course of antibiotics is finished.

Hi I have been taking Azithromycin for a few years now 3 times a week I still get chest infections but not so many has I used to get my problem now his when I get a chest infection like I have now it can take a few weeks to shift it, immon a long course of steroids 6 per day for 6 weeks then reducing down by one per week until I finish the course.alsomif you are on antibiotics don't take the Azithromycin until you have finished the course of ABs

Thanks for your helpful reply. Take care.

I have been on azithoromicin for some years seems to help keep me out of hospital

Thanks for your reply. It appears to help many people so hopefully it will be the same for me.

I have been on Azithromycin for over 5 years, 3 times a week in theAt time I have only had 1 chest infection, and that was right at the beginning when my lung consultant told me to stop taking it betweenMay and September because ‘people don’t get chest infections in the summer.’ In that time a got a really bad infection so have taken them all the time since then. I haven’t had 1 infection since then.

It certainly seems to have helped the majority of our members. Thank you.

I went on the Azithromycin, 3 times a week, about 3 years ago, but didn't get a chance to see if they worked as they gave me a terrible ulcerated mouth. I think the only way of sorting a chest infection is to get a sputum sample (have you got sputum sample pots at home?) into your surgery for the hospital to test and find out what the bug is, and to recommend the right antibiotic to get rid of it. This can take a good few days, so take the Doxycycline or Amoxacillin to start with, but your doctor should inform you and provide the right antibiotic when they know.I used to get regular chest infections, 18 in 2017, but had hardly any since we found black mold in our home and got rid of that. Worth checking!

I know a lot of people find Azithromycin works for them, so give it a go. Good luck.

Thank you for your reply and good advice. I think Azithromycin appears to help/prevent lots of infections so will probably give it a try as advised by my bronchiectasis consultant.

I’ve taken Azithromycin for nearly 3 years.

It’s to stop you getting ill hopefully.

I take it Monday Wednesday. Friday.

I’ve it had a chest infection for 3 years,I used to have a chest infection every month.

I also take co trixamole Tuesday Thursday Saturday.

Although My health conditions are still there,it prevents infections,which does help,

I’m not. dr,but this drug works well for me.

RoadRunner44 profile image
RoadRunner44 in reply to Oshgosh

Thank you for your useful reply. Take care.

I have been taking Azi now for about 10 years & at first thought I was on a miracle drug, instead of the exacerbations every month or so they went down to about 2 to 3 a year , and stayed like that for about 5/6 years , it has lost it's 'magic' a little now but I am still not up to every month or 2 , , but my lungs have deteriorated a lot over the time. I am still on Azi YES YES YES do take it , it is brilliant , not a cure but it helps to make life better Love Sohara

RoadRunner44 profile image
RoadRunner44 in reply to Sohara

Yes, yes, yes, anything to make life easier, i agree. However, Sadly I understand that taking a drug for a very long time would make it less potent. Thanks for replying it does seem to help.

Sohara profile image
Sohara in reply to RoadRunner44

It may do , but I know some have been taking it for longer than me even , it really is the best drug to be on. If you get an exacerbation stop taking the Azi while you are on the main antibiotic

RoadRunner44 profile image
RoadRunner44 in reply to Sohara

Thank you for the reminder and hopefully it works for me too.

My wife, who has suffered for decades, was put on the same regime as you 2-3 years ago.....no more break out, just like a switch being turned off. Wonderful

Such good news. I hope it works for me too with no side effects.

Hi. I have been on Azithromycin now for over 6 months, and touch wood, have not had a chest infection. The Azithromycin keeps the background bugs in check, and the Doxcy is incase you have some other bugs visit. That is the same with me.

RoadRunner44 profile image
RoadRunner44 in reply to Digger0

Very simply put Digger. Thanks for replying.

Glad it helped! I like to put things in easy terms :)

Hi roadrunner, I have been on Azithromycin for over 10 years. Before taking Azith I was suffering pneumonia every 3 weeks this caused me to lose weight and spend most of my time in hospital. After diagnosis of bronchiectasis I was put on Azith. It does have side effects such as hearing loss and tinnitus, however, it has worked for me and I have my life back. I remember the first week's it did upset my tummy but I soon adjusted to the regime and I take yoghurt or antibiotics every day. I hope it works for you. Take care, Maximonkey

Thank you so mu ch and hopefully you continue to find it works for you. I am partly deaf because of the rhinitis so the loss of hearing will be something to consider.

Hi Roadrunner, my doctor said to me when I was worried about the tinnitus side effect, "would you rather be deaf or dead" of course there was no contest. I do get tinnitus every now and then and I do use hearing aids but my life is good and I do not regret taking the chance on Azithromycin. Think carefully before you say no. Take care and good luck, Maximonkey

Hello and thanks for your reply. I am waiting for an operation to drain my ears and have grommets fitted as I have become partially deaf because of rhinitis. My bronchiectasis specialist recommended Azithromycin as it is unlikely my ear operation is going to be imminent. It is already difficult having limited hearing and the thought of being unable to hear at all is very difficult. Under the circumstances I will ring ENT to see if my operation can be brought forward or to get advice before starting on Azithromycin.

Hi Roadrunner44, I am sorry your rhinitis has caused your hearing problems but I am glad you can in time, look forward to having the op. Will the gromets help your hearing? I hope so. I think you have misunderstood the warning of deafness, it does not suddenly happen, with me the tinnitus began 5 years after I began taking Azithromycin and when I had my hearing test the consultant said I was no more deaf than any normal 70yr old, so the Azith had not done much damage to my hearing. Since then I had more hearing tests and only the tinnitus (which does not happen often) is causing me any problems. My hearing aids help to mask the tinnitus and therefore now I am hardly aware of it. I definitely would not wish to go back to the way I was with the recurring pnuemonias. I know I would have died by now I was so ill. You of course must make your own mind up about the pros and cons. One observation, I also needed an op on my foot and it was the Azith which made me well enough to have the op, so really it is swings and roundabouts. Take care, Maximonkey

Thanks for your reassuring reply. I contacted ENT yesterday to ask for advice. They will get back to me after discussing the problem with the consultant.

Good luck Maximonkey

I have been using azithromicin for over a year and it has done wonders for my breathing along with daliresp “ I notice the difference on days I don’t take it”

RoadRunner44 profile image
RoadRunner44 in reply to Jackm

It certainly seems its doing the job as you can notice the difference on the days you dont take it. You haven't had any side effects either I assume?

I take azithromycin 250mg twice a day.for me it doesnt stop my frequent exacerbations but i do think i recover quicker than i used to - i used to need various courses of antibiotics + long steroid courses - now 1 14day course of a/b and steroids settles infections/ flareups.i too stop it whn on another a/b.its favoured for its anti inflammatory effects- perhaps not enough so 4me.but definately worth a try.i use avamys nasal spray and fenofexadine antihistamine for chronic rhinosinusitis

I have been on Doxycycline for 2 years now it's a 6 week on 6 week off it seems to be working only had 1 chest infection so far ,better than before which was every 8/8 weeks had chest infection.

Thats interesting i thought doxycycline was given mainly as a rescue pack as in my case.You learn something every day. Its good news that it works well for you.

Touch wood so far so good ,also have it with my rescue pack .

🌻🌻🌻

Sadly azithromycin did zilch for my husband. On them for over 6 months but they did nothing to reduce infections etc. His bronchiectasis consultant told him to stop taking them. I think they help a lot a people but unfortunately not everyone. Hope they are successful for you.

Thank you for replying. As Azithromycin didnt help your husband or reduce any infections did his consultant put him on a different medication?

No, he just advised Clifford to use his rescue system and keep trying to keep his lungs as clear as possible. So do sputum sample for path lab and then start his Doxycycline. Husband has had bronchiectasis for over 70 years and this bronchiectasis consultant for about 20 years so they are on the same page. His previous consultants were not so knowledgeable but this guy is very good and also looks at patient holistically and not just their lungs. We always let GP know who organises replacement rescue pack straightaway. We have a nebuliser at home with salbutamol and saline nebules if needed. Unfortunately carbocistiene never works for Clifford either so struggles with gunge on lungs. Hope azi works for you though.

🥀⚘🌼

🌻🌷⚘

Hi I’ve been this for over five years I have to say it keeps my infection at bay I swear by it good luck stay safe x

Thank you for replying. Most replies I have received say the same as you that Azithromycin works well. My only worry is some people have tinnitus and hearing loss as a side effect. i am already partially deaf as I have severe rhinitis as well as bronchiectasis and waiting to have an operation to have my ears drained and grommets fitted. I am a little unsure whether to start taking them because of this. I'm going to ring the ENT specialists secretary tomorrow to get some advice.

I have been taking azithromycin for around 3 years now. My consultant prescribed it to reduce the number of exacerbations I was experiencing. It doesn't have any direct impact on how you feel but I can say that I have experienced less infections than before. Take care

Thanks for your reply. Some replies i have had show that there are sometimes side effects such as tinnitus and loss of hearing. Have you experienced any yourself? Its z bit of a worry as Im already partly deaf because of rhinitis.

I also take Azi for about 7 years now, i do have some hearing loss which i have been told after tests is due to taking Azi. I was warned about this before taking them. I was prepared to take that risk. I have only had a few hospital admissions since taking them. I feel that the benefit of taking them far out ways the hearing loss. I am still alive that has to be good doesn't it

Thanks for replying. I have to be honest, losing my hearing would be a huge loss to my wellbeing. I am going to ring my ENT consultants office today to ask advice.

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