long term antibiotics Azithromycin - British Lung Foun...

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long term antibiotics Azithromycin

Polly44 profile image

My respiratory nurse has written to the consultant suggesting i maybe need long term antibiotics (Azithromycin ) to prevent further infections. Can anyone who is on long term antibiotics for similar tell me if this is likely to be every other day or 3 days a week and how many times a day in their experience please . Thank you

108 Replies

Hi Polly, Pete is on Azithromycin three times a week and takes one every Monday, Wednesday and Friday. Hope that helps. Xxx

Polly44 profile image
Polly44 in reply to sassy59

Thanks Sassy good to know. I would be lying if i said i would rather not go on antibiotics forever (cant be good for you surely) but suppose got to weigh up pro and cons and if it stops the infections will be worth it.

sassy59 profile image
sassy59 in reply to Polly44

Pete does well on them so worth it for him. Good luck to you. Xxx

Polly44 profile image
Polly44 in reply to sassy59

ok sounds good if it works then worth it eh, i do like a wine or a few at weekends ha ha. does pete drink on them ? (sorry last question)

sassy59 profile image
sassy59 in reply to Polly44

Pete doesn’t drink so I can’t answer that one. I don’t see why you can’t have a tipple or two though. Xxx

Polly44 profile image
Polly44 in reply to sassy59

ok thank you for your help and replies xx

I’ve been on them for 3 years, I take them Monday Wednesday,Friday.I also take co amoxiclav Tuesday Thursday Saturday..

It’s works ok for me,

I used to have at least 2 infections every month.since I’ve been on these tablets I haven’t had an infection.

The consultants are pleased as my lung disease hasn’t progressed much.

I’m pleased because I’m not constantly getting chest infections.

The first year I was on it ,the lung consultant advised to stop taking the Azithromycin for the summer.

I wasn’t well,I asked the GP, who was happy for me to re - start them.

Polly44 profile image
Polly44 in reply to Oshgosh

Hi you are on a-lot of antibiotics constantly by sound of it . Im glad they are working for you. madly apart from being asthmatic they can not find anything wrong which is causing my infections. I suspect the problems i have have started from 2 yrs untreated haemophilus influenzae (2017 -2019) and constant phelgm issues since. but on paper I have only had 3 infections the second one i got when i had not still got rid of the first infection. it took months to get rid of the first one (i had to guess through covid times thinking/ feeling as tho i had one, as they wasn't doing testing). so Im unsure if its too soon or not to just put me on antibiotics forever, thank you for your reply im glad they are helping you.

Oshgosh profile image
Oshgosh in reply to Polly44

I was prescribed the antibiotics by a lung consultant during a hospital admission 3 years ago.I’m not happy about taking so many tablets,but I’m afraid needs must to keep as well as possible x

Polly44 profile image
Polly44 in reply to Oshgosh

Yes I hear you and sounds as tho you need to be on them, and they seem to be working for you which is good especially in the long term if they are helping. x

Im on 2 pills every day

Polly44 profile image
Polly44 in reply to Patk1

hi so you are taking 2 every day, hope that works for you, thank you for replying , good to find out over how many people are taking minium and maximum amounts so thanks for that

Patk1 profile image
Patk1 in reply to Patk1

I take 250mg twice a day.not as effective as some people have,but i think it reduces the time flare ups/infections last if i recognise symptoms soon enough.id be inclined to try it

Polly44 profile image
Polly44 in reply to Patk1

Its seems the majority of people are on this 3 days a week spread out over the week, i have a feeling thats the way the doctor will prescribe this for me. Im glad it helps you over all. thank you again for your reply/help

Hi as Sassy has said …one every Monday Wednesday and Friday. I have taken them for several years and they have been very beneficial to me. 😀

Polly44 profile image
Polly44 in reply to Gladwyn

Thanks for that Gladwyn . I am thinking this could well be the dose they put me on.

Gladwyn profile image
Gladwyn in reply to Polly44

You’ll be fine 😀

Yes every Mon,Wed,Fri. Consultant says using them as an anti inflammatory.

Polly44 profile image
Polly44 in reply to Lol1944

thank you for your reply , do you find its stopped you getting any infections or is it just to calm your lungs down so to speak ?

Lol1944 profile image
Lol1944 in reply to Polly44

Yes consultant said was to calm the lungs down. Exacerbations have been fewer and the most noticeable improvement has been that I have been able to carry on as I used to do years ago.

Long term azithromycin is usually taken once a day, three times a week, and used across all of the productive lung conditions, but not on the basis of being used as an antibiotic in the way other drugs are. It actually has a very limited spectrum of efficacy for the ‘usual’ bacteria involved in respiratory diseases, with staph, h.influenza and strep often naturally resistant to it, and it has no effect on problematic bacteria like pseudomonas, so antibiotic resistance isn’t a particular concern with using it long term in this way. We still don’t really understand how it actually works, but there is a distinct anti-inflammatory action that they think is responsible for reducing frequency of infections in certain individuals, rather than it primarily being about keeping bacteria at bay by killing them. Which individuals will benefit? We don’t know, so it’s a case of taking it for a few months and seeing if it works for the person in question. My daughter took it for 5 years and was no better off on it than she has been off it since we switched hospitals two years ago: there is guidance that a 6 month trial is appropriate, as well as varying suggestions about only taking it for certain months a year (usually late autumn through spring), or restricting use for a period of two or three years, but it ultimately comes down to consultant preference in conjunction with individual response as to how long it’s taken for, and there are plenty of patients who take it year on year. It has a good side effect profile, and you can drink alcohol whilst taking it, meaning patients are generally more than happy to take it long term: for those it works for, it can work incredibly well, it just doesn’t necessarily work for everyone.

Polly44 profile image
Polly44 in reply to Charlie_G

Thank you very much for that Charlie , very informative and helpful. It has definitely given me something to think about as very unsure. Also points that i can discuss when i do talk to the consultant . Which was supposed to be yesterday (he was calling to discuss putting me on these antibiotics) but he never called and today the hospital said my hospital notes just said to rebook, so I am assuming they bounced my appointment as they were busy. I was told i would get another telephone appointment through in the post.

Charlie_G profile image
Charlie_G in reply to Polly44

Glad the reply was helpful 👍 Although it didn’t work for the child, I’m actually a fan of the principle of trying it: plenty of people take it with good, very beneficial effect and no issues. Anecdotally, the main side effects I’ve seen cropping up in posts here are gastro related ones, but these don’t appear to be massively commonplace (I think they’re classed as common in the patient info leaflet, so 1 in 10 chance) and generally seem to subside over the first few weeks for the majority. For my daughter’s particular lung disease (cystic fibrosis), they centralise data to aid research, and the last published figures for 2019 had more than 4000 patients using Zith on this long term basis in the UK. That’s more than 40% of the patient population, including use in young children and toddlers where clinically indicated, and there’s an evidence base for using it spanning a good 15 years now. Over the pond, the usage stats are even higher. It’s also one of the few treatments that has translated across the various respiratory conditions; prophylactic zith is increasingly widely used in COPD, non-cf bronchiectasis, and asthma, with lots of studies to support doing so, although it’s still prescribed off licence for this purpose. I believe I’m right in saying that the general clinical indications to try it (outside of cf) are 3 or more exacerbations in a year, or repeated exacerbations requiring steroids in spite of maximised inhaled corticosteroids and inhalers, or less frequent infections but associated with significant loss of lung function. I would be willing to give it a go if I was having frequent infections.

Fingers crossed they rearrange and phone again soon. Annoying when that happens, I know, but a little bit par for the course these days.

Polly44 profile image
Polly44 in reply to Charlie_G

Hi Charlie the gastro thing makes me wonder if i would be ok on them esp long term. when i get put on all this strong courses I do get stomach aches and acid reflux (even with taking omprezole while on them too). A couple of people have mentioned can effect heart (which being a chicken kind of scares me a bit ha ha). my problem is on paper ive had 3 guaranteed infections over 3 yrs but have been given 14 lots of antibiotics over last 2 yrs and 3 or 4 lots of predislone steriods. some were to get rid of stubborn infection that was undiagnosed for 2 yrs which took months to get rid of because of that and i picked up a second one when first one had not cleared fully. loads antibotics and steriods through covid times but no testing was done as they had stopped the tests. but had 2 clear tests earlier in the yr now one more infection. so is my problem im prone to them now, or just unlucky cos got one and was left for so long and how i felt through covid times just mucus problem (think im kidding myself but almost want to say can we just give it 6 months see if i get anymore. Other part of me saying Polly dont be an idiot you have not felt right for yrs try it might be answer to all problems ha ha. Im probably over thinking it. I Hope they have found something that helps with your daughter xx

Started on Azis daily between October and March. 2 years later changed to 3 days a week as tests had shown there was no difference between taking 3 or 7. I have Asthma, Bronchiectasis and Copd.

Polly44 profile image
Polly44 in reply to clematis5932

Thanks Clematis I hope they are working /helping you

Hi Polly, i had HIB for 3 years was on doxy on and off for that time. No success the hospital put me on Azythromicin 500mg 3 days a week for 9 months. It was the only thing that got rid of the nasty infection in my left lung. Now im free of infection 2 years later so worked for myself. Hope this helps. Karen xxxx

Polly44 profile image
Polly44 in reply to Pwkav1

Hi karen thats great to hear and defo makes me think its worth a go for sure. thanks for replying xxx

1 tablet, Monday,Wednesday, Friday. Been taking it 11yrs & it helps a lot. Good luck!x

Polly44 profile image
Polly44 in reply to Lfcpremier

ok great glad they are helping you, thanks for replying.

Hi polly I'm on them aswell but with me I take one every day and it's made a big difference to me ive been on I think 2 and half years I've not had an infection since as I was allways getting infections hope this helps

Polly44 profile image
Polly44 in reply to Danielmystar

Hi Daniel ahh thats great nice to hear they are working for you and stopped them infections, thank you for taking the time to reply :)

Hi I’ve been on Azrithromicin for about 6 months after having a couple of awful years of infections every six weeks or so and huge amounts of antibiotics and prednisone. I’ve felt better than I have for years, 3 times a week. Only one exacerbation and not as bad as they used to be.

Polly44 profile image
Polly44 in reply to Morningjoy

Ahh im glad its working for you, thats way ive felt few awful yrs but over a yr of which i was not tested cos covid so i honestly dont know what was infection or whether was just mucus problem :-/. thank you for letting me know how you are doing on them and replying take care.

Morningjoy profile image
Morningjoy in reply to Polly44

By the way it took a while to kick in, and it gave me loose stools for a few weeks. Worth persevering if you can, it goes away.

Azithromycin 500mg for me Monday Wednesday and Friday been a godsend

Polly44 profile image
Polly44 in reply to B0xermad

ahh glad its working for you, thank you for letting me know and replying :)

Hello Polly, the consultant suggested Azith when I was diagnosed 2 years ago. I wasn't keen, although she assured me it would not affect my immune system. I did so well without it through the winter it didn't seem as if I needed it. Then, whumph, in the summer I had a mega and long drawn out infection (haemophilus) and the respiratory team put me on Azith 3 times a week. Touch wood I've been fine for over a year and it did not affect my covid jab immunity.

Polly44 profile image
Polly44 in reply to Alberta56

Hi Alberta oh I know how stubborn that haemophilus can be. what did they put you on to start with if they upped it to 3 times a week ? , glad its properly working for you now, thank you for replying.

Alberta56 profile image
Alberta56 in reply to Polly44

I was put on Co-amoxiclav500, which finally knocked out the haemophilus. (I had previously had an allergic reaction to Clarithromycin.) Plus Prednisolone with a great deal of help from my AeroBika.

Polly44 profile image
Polly44 in reply to Alberta56

They gave me several different ones to get rid of it, but 2 different infections since that one , god knows where im picking them up from.

Alberta56 profile image
Alberta56 in reply to Polly44

When I did pulmonary rehab, we were told that there are lots of nasties floating in the air, which healthy lungs can cough up and get rid of. Ours unfortunately can't, which is why the PR team explained we have to learn lung clearance.

Polly44 profile image
Polly44 in reply to Alberta56

ahh ok makes sense, the resp nurse has referred me for sputum clinic to learn how to bring stuff up (so assuming thats it eh. I spoke to resp nurse a few weeks ago now but nothing through as of yet for that. thinking it will probably be another zoom call appointment.

Alberta56 profile image
Alberta56 in reply to Polly44

Best wishes- I hope you get an appointment soon.

Patk1 profile image
Patk1 in reply to Alberta56

Alberta 56 i use to get haemophillus influenzae awful long infections but got immumised againsst it.its b very effective. Do ask about it.

Alberta56 profile image
Alberta56 in reply to Patk1

I will, if I ever get to see a medical person.

I take it three times a week...just one tablet. However I had to have an ECG first before going on it as it can cause heart rhythm problems if you are already susceptible.I'm not sure whether it's been helpful or not... I still get infections 2-3 times a year.

Polly44 profile image
Polly44 in reply to stones93

Hi that is defintly worth knowing about heart thing even to disscuss with consulant , Its a shame you are still getting infections on them I hope it has reduced how many you get now at least. Thank you for your reply

Hello I am about to start these next week and have to take on Monday Wednesday and Fridays just one a day. Hope this helps xx

Polly44 profile image
Polly44 in reply to gingermusic

thank you seems to be how most people are taking them. thank you for your reply and i hope they help you. xx

gingermusic profile image
gingermusic in reply to Polly44

Thank you

Three times a week Mon wed friday

Polly44 profile image
Polly44 in reply to Pokermon

ok thank you

How coincidental,I also have been put on azitromicina yesterday so I cant give you an update but maybe we could compare notes as we go along,I was told every day, but I notice on the prescription it says every 3 days.I am having phone appointment with my doc this morning and will let you know polly 44Best regards

Ragrug

Ragrug profile image
Ragrug in reply to Ragrug

Have spoken to my doc and it is every day for me at 250 mgs . I m wondering if the 3 day is for the higher dose of 500mgs.Regards ragrug

Polly44 profile image
Polly44 in reply to Ragrug

Yes it does seem to be most are taking the 500mg ones 3 times a week , thank you for your reply

Polly44 profile image
Polly44 in reply to Ragrug

I have to wait till i get another telephone appointment with the resp consultant before i even talk to him about starting them (they bounced my appointment which was Tuesday so am waiting for another one to come in the post). But defo let me know how you go please and whether you are infact taking it every day or 3 days a week. thanks

I'm on them long term I take them 3 times a week but if I get a chest infection and go on Antibiotics, I stop taking them until I finish the course.

Polly44 profile image
Polly44 in reply to JasperDylan

I hope you are getting less infections from taking them.

JasperDylan profile image
JasperDylan in reply to Polly44

I still get infections but not so many has I previously had .

Polly44 profile image
Polly44 in reply to JasperDylan

ok glad they are reducing them now at least.

I am on Azithromycine 250mg 3 days a week. Been on them 4 years and haven’t had a chest infection or exacerbation since starting them. x

Polly44 profile image
Polly44 in reply to Watchingtv2

ok that sounds great , glad they are helping you

Hi Polly44. I am on long term Azithromycin and it is Mon, Wed and Friday every week. Hope it helps you.

Polly44 profile image
Polly44 in reply to Digger0

Thank you , I hope it is helping you :)

Digger0 profile image
Digger0 in reply to Polly44

Yes, touch wood I have not had a chest infection since I have been on it.

Polly44 profile image
Polly44 in reply to Digger0

oh wow so it definitely is then, another its working .... am more and more thinking these are worth giving a go. thank you

Digger0 profile image
Digger0 in reply to Polly44

You have nothing to loose and lots to gain. I was having 5 or more chest infections every year needing AB's and steroids, usually for 2 weeks :)

Slightly different answer, Doctors & consultants will prescribe long term antibiotics for several different conditions as they have in my case.

My consultant tried me on 1 antibiotic 3 times weekly as my asthma was not being controlled well, he suspected there was a strong little bug that the usual dose of antibiotics wasn’t fully killing off, he must have been correct as it worked along with a few other adjustments to my meds this has improved my breathing & lifestyle…I only took it for 3months.

Also Several years ago I was given long term antibiotics for a continual bladder infection.

These infection would crop up with little warning & causing me huge problems, (they weren’t water infections) I was given emergency antibiotics to take as soon as it hit, this helped in the short term but never fully solved the problem.

My GP decided it needed further investigation, this found a small area of infection around the rim of my bladder which would obviously spread periodically & cause my continued problems.

My GP advised a long term antibiotics 1 daily was needed, I took this for 18 months because this bug needed killing once & for all..I’ve never had the bladder problem since thankfully.

What I’m trying to say is “ what have you got to loose ? it’s worth a try if it improves your life “ you may not need it forever ( as in my case ) its sometimes the only way to really kill these persistent bug….Good Luck & Best wishes.

Polly44 profile image
Polly44 in reply to Med75

Thank you, and I definitely hear what you are saying and one part of me is saying the same what if this just stops me getting more infections (problem sorted) but other part of me is saying I get stomach acid when Im on all these antibiotics (normally 2-3 courses at times of 1000mg a day (hoping that one tablet 3 times a week i might not get it as much. My second dilemma is cos i had the first bacteria untreated for 2 yrs (cos docs didnt do a simple phlegm check to check for it, well it obviously colonised in my lungs and infection had halved when i went to see my son in nz (had had several courses of antibiotics cos was being stubborn to go) , by time i came back i was worse and had picked up a second infection also (that was November 2019). had more antibiotics then covid hit they stopped testing and i just played a guessing game eg was all coughing and phlegm infection or not so they just kept throwing antibiotics at me, had 2 tests that were clear this yr but i didnt feel right, and then got latest infection in last few months. ct scans a yr ago showed inflammation or mucus (which was my main problem and coughing /wheezing which is defo the phelgm not my asthma wheeze. since this all started (asthma was controlled since was put on monteluast when i was 20 was servere asthmatic since a child before that. I was recently in last few months put on sprivia respimat which calms airways down but i think this last infection started around time i was put on it. infection I think has gone (3 weeks of antibiotics) but having only had 3 guaranteed infections, and honestly don't know if lungs just been inflamed for so long causing the phelgm as protection, do i wait see how i am now see if i get any more infections or is the fact ive had 3 different ones and could of had more when not tested enough t jump on these, and yes it is the forever on them that worries me too ha ha. I honestly think over in my area they will put me on them and just leave me on them. Ive not even seen the resp consultant once and the resp nurse dont have much faith in, sending me for airway inflammation test when ive just had predislone then saying well it would come back as good u just had steroids, why send me for it at that point then. why not wait till Ive been off steroids a while :-/. Im glad they are working for you and they have sorted out your bladder infections. Thank you for replying and am seriously weighing up giving them ago. (all be it a bit nervously hearing certain things about these antibotics.

Med75 profile image
Med75 in reply to Polly44

You poor soul Polly 44 I really feel for you, I was like you for a long time complaining about my stomach acid & never sure if I had an infection or just increased asthma that I needed to take steroids.

I have been taking omeprazole for years as Dr thought I had ulcer, it was a never ending cycle I requested to have an endoscopy several times but told it will likely show an ulcer from asthma meds, I had requested to be referred to respiratory consultant several times & started to become stressed with it all.

In the end my husband decided enough was enough & paid privately for me to see a respiratory consultant, the consultant said he’d write to my GP & suggest changing meds & the antibiotics for 3monthly.

Things changed after this, I felt the GP started to listen more & I finally got a referral to a Consultant/Chest Physician at our local hospital..then Covid hit but fair play to the physician she rang to explain why I couldn’t see her in person ( at that time ) I was happy to continue with phone consultations.

I let her know every issue & worry I had in that first call, I’d become somewhat depressed by then & knew I had so also explained this to her.

She arranged another lung CT scans, lung function test, an endoscopy plus referred me for a throat investigation as I always felt there was some obstruction there.

She even referred me for a compleat bone scan as I’d complained about pain in my left rib area for months that kept waking me at night..in fairness my GP had done test & arranged a normal CT on my ribs which thankfully showed nothing nasty.

Ive had the tests, I don’t have an ulcer thankfully but the physician said I need the omeprazole as the asthmas meds are cause irritation, there was no issue in my throat, my asthmas meds were changed slightly. I was on Spiriva, Fostair 200, which was reduced to Fostair 100 as a trial, now back on Fostair 200, monteluast, plus I’m on a low dose of amitriptyline to ease my anxiety ( which exasperated my asthma ) & for it to reduce my rib pain.

I could go on but I’m sure your yawning by now..lol. Please don’t just ask to get a referral to a respiratory consultant, politely but strongly tell your GP I want a referral as I did.

I’ve had a second lung function test, been doing deep breathing exercises to help slow my breathing & anxiety. I’m feeling much better…I’ve stopped the Spiriva…so far so good.I increase my Fostair if my asthmas flairs, this is to stop having to resort to steroids.

I hope all my rambling experiences can help you get some normality back in your life..we too have a son & family in Canada who we were due to fly out to see last year..but we’ve rebooked to visit in 2022.

Best Wishes always.

Polly44 profile image
Polly44 in reply to Med75

oh you do sound very similar to me . When this all started i thought must be my asthma getting worse again and they changed me to fluitform twice a day and that seemed to help with the no air feeling but constant phlegm was horrendous and felt at times i was full up with it , X-rays and steroids other than that, they was talking bout putting me on copd meds as last resort .

Finally saw a trainee doctor who asked had they ever done a mucus sample test, a week later found out finally after 2 yrs it was haemophilus influenzae and i cried thought brilliant now can get it sorted know what it is (how wrong was I ).

The stomach acid well before covid times at time i got real stomach paid round the outsite of stomach and use to bring up bit of acid and the doctor gave me omprezole to take when needed, through covid times i carried on taking it and don't get anymore pain since on it all the time. To be honest I never even knew the asthma meds could do that stomach acid etc (makes sense ) I have through covid times felt like this has to be infection the amount im coughing up /wheezing then other times thinking do i need steriods , was a nightmare trying to self diagnose myself and not being able to see anyone. Ironically still not seeing anyone. My doctor did finally refere me through covid times to consultant who cancelled appointment and just sent me for ct scan and funtion test.

The Ct scan he said showed a dent in left lung (consultant told me lots of people have it nothing to worry about) and other than that showed inflammation or mucus it said so good news there.... except i still didnt feel right and had to carry on playing the guessing game eg guess if its infection or not until this yr when ive been tested again 2 tests were clear but then got another different lung bacteria couple months ago (had already had one weeks antibiotics couple weeks before i tested and within days was bring up thick green again, got tested 2 week course of Erythromycin 1000mg twice a day, seems to have done the job mostly am bringing up tiny bits now not wheezing when i lay down at night but at times cough lungs up to bring up tiniest bits. (sorry if tmi).

so my doctor has refered me resp consulant just put me onto hospital asthma nurse who honestly i think is a bit hopeless, as i said testing stuff at wrong time didnt even look on comp at other test she did in-between appointments (until i asked ) that was see if was inflammation in my blood the hospital had done the wrong test anyway, feel like now she is like oh what can i send her for to say ive done something. I get bit more acid when taking these antibotics (fine when im not on them ) just worried if stay on them will it make stomach things worse, trying to sort one problem dont want another one lol. funny you should say about rib cos one side my rib has started hurting on outside at top of my stomach feels bit bruised if i touch it. knowing me i prob have walked into something (can be clumsy lol).

I wasn't yawning at all its very helpful to hear other peoples experiences and compare to see similarities and get some insight to what is working for everyone. I will take any advise help i can get ha ha, sick of having to play doctor to myself .

I bet your are counting down to go to see your son and family in Canada , I luckily got to see my son In nz just before covid hit (have no idea when i will see him again) but for obvious reasons im actually glad he lives in Nz since covid was one son less to worry about (other one is a carer in a home and was worried sick about him especially in the beginning. 2022 will be here before you know it :)

Its you that will probably be asleep after my essay ha ha

Take care

Polly

Hi polly I take mine Monday Wednesday friday.

Polly44 profile image
Polly44 in reply to November65

hi seems to be how most take them by the sound of it, thank you for your reply, I hope they are helping you.

I've just started these, Monday, Wednesday and Friday for me too. I had to have an ecg and blood test before I started and another ecg and echocardiogram is booked for two weeks time. The azithromycin can affect the heart apparently and I'm on another drug that may react with azithromycin to affect the heart.

Polly44 profile image
Polly44 in reply to Karenanne61

hi karen this scares me a little being honest but glad they are monitoring you, sure its just to be on safe side. I honestly dont know what to do for the best, part of me wants to hang on see if i get one more infection (probably kidding myself ). thanks for your reply I hope they help you.

Karenanne61 profile image
Karenanne61 in reply to Polly44

Lots of decisions us 'lunngies' have to make are SO hard. It's just weighing up risks and benefits. I've been prescribed azithromycin as it has been seen to help with copd. Good luck.

Polly44 profile image
Polly44 in reply to Karenanne61

yes it is hard when they give me all these courses of antibiotics i just take them ha ham, but now thought of being on them constantly for 3 days a week possibly forever is making me more nervous. probably being silly. Im glad they are working for you :)

I was put on this 3 days- a- week AB. Didn't get the chance to see if it worked as they gave me a terrible ulcerous mouth. I have read that they do help most, but not for me. I used to get loads of chest infections, 18 in 2017 (I kept a diary), but had hardly any since we got rid of black mold in our home in around March 2018. We found our bathroom floor was totally covered with Black Mold when we had the bath replaced by a walk in shower. Had the floor totally replaced, thereby getting rid of the mold. The bath drain had been leaking, and we had been in the house 4 years during which time I had probably 50 chest infections.

Worth checking!

Polly44 profile image
Polly44 in reply to Lutontown

oh wow not good, to be honest mine has been different lung bacteria, haemophilus influenzae, moraxella catarrhalis, and latest was staphylococcus aureus, so guessing im picking them up from other people (god knows how ha ha) during lockdown they stopped checking samples but got bad again then to so more antibotics but wasnt tested. I really hope now you have sorted your bathroom floor out yours have stopped now.

Lutontown profile image
Lutontown in reply to Polly44

Yes, since that moldy floor has gone I haven't had any chest infections. Just had a couple of courses of Amoxacilin to sort out sinusitus bouts. So, other than that mold, I don't know where the bugs come from. In 2014, I had a bug, Staphylococcus Aureus, which I had on and off from end of, March until November, when after a CT scan, the consultant had me on intravenous AB, which sorted it. Oral AB's sorted of quelled it, but it just kept coming back. However a week later I had another run-of-the-mill CI, which was got rid off with a run-of-the-mill oral AB. I believe that long exposure to that bug SA, was the cause of my bi-basal bronchiectasis.

Polly44 profile image
Polly44 in reply to Lutontown

Yeah they thought I had bronchiectasis but ct came back i didnt, ironically the notes aberration said it was partial chronic colapse lung (which my doctor explained it to me as that) and inflammation or mucus on lungs. But when I spoke to the consulant he said no i had a dent in my left lung that was fine many people had it was nothing ha ha (go figure god knows) but said all was fine. Not good that the sA caused it sorry to hear that. I honestly thought my servere asthma since i was a child into adult and then the untreated infection for so long was my problem and had either caused damage/scaring but seems not so no idea why i keep picking up the infections. Im glad the infections have finally stopped for you now.

Patk1 profile image
Patk1 in reply to Polly44

Polly44 ive b immunised against Haemophillus Influenzae.v effective 4 me

I’m on it 3 times a week. I have only had one chest infection since I started it, maybe 5 years ago. My lung consultant told me to stop taking azithromycin from May until September because ‘people don’t get chest infections in the summer!’ Needless to say I had the worst chest infection I’d ever had! I now take it all year. Incidentally, research has shown that taking twice the usual dose 3 times a week helps asthma, and it has helped mine. I now take 500mg each time in the form of small rugby balls!

Polly44 profile image
Polly44 in reply to helenlw7

Hi Helen Well The consultant got that wrong eh, its silly really Ive taken (counted last night ) 14 lots of mostly 500mg doses of so many different antibiotics and 4 lots of predislone over the last 2 yrs alone and im nervous about taking them constantly. ironically my asthma has been totally controlled since the age of 20 and was put on monteluask. even with the infections i don't think its effects my asthma much (only had a no air feeling before they realized i had the first lung bacteria cos was undiagnosed for 2 yrs, and when i had 2 nd infection on top of the first then felt that no air feeling then. even oxguen level been fine when ive actually seen the doctor but im full of phelgm and wheeze cos the phelgm not my asthma. I have no problem swallowing tablets so should be ok with the rugby balls ha ha. Im glad they are helping with infections and your asthma.

helenlw7 profile image
helenlw7 in reply to Polly44

I don’t have a problem with taking tablets but I do like to take them all in one go so on a Monday I take one of those, a calcium tablet, 2 co codomol, an antihistamine, a capsule for my eyes health and lansoprazole as well as some little tablets! I take Monte Lucas too but my asthma isn’t too well controlled.

Maricopa profile image
Maricopa in reply to helenlw7

My worst exacerbation ever was during summer!!!!

Hia 3 times a week works for me ,but take a probiotic.messes with gut .

Polly44 profile image
Polly44 in reply to Balloo

Hi yes I do now always when Im on antibiotics (after 14 lots in 2 yrs ive defo found out the hard way to take them ha ha.

Hi Polly I take mine Mon/We’d/Fri and it has helped

Polly44 profile image
Polly44 in reply to Bertie-11

Hi Bertie ,thank you for your reply , Im glad they are helping you, generally seems they are helping alot more than they are not.

Hi Polly44, I have been taking Azithromycin for 10 years now and I call them my miracle drug. They really have changed my life, I only suffer one exacerbation per year normally and it is easily dealt with by my GP or my emergency tablets. I take 1 x 3 times a week, Mon, Wed and Fri. I did experience a few minor side effects at the beginning which I solved by drinking yoghurt drinks which helped to settle my stomach. Looking back I felt so ill back then I was just glad to take them and not end up in hospital every third week with pnuemonia. After the initial 6 weeks or so I had no side effects at all and I just make sure I eat a small portion of yoghurt daily. I do hope they help you as much as they have helped me. Take care and good luck, Maximonkey

Polly44 profile image
Polly44 in reply to Maximonkey

hi ya Its funny you should say about miracle drug thats what i called montelukast when i was first put on it. I could not walk down the road without having an asthma attack and was forever on predislone. My asthma was bad since i was very young up until age of 20 when they put me on montelukast. Literally It was like I didnt have asthma at all, barely took my blue pump.

Then at age of 44 (2017 ) i thought I had a chest infection that just wouldn't go. I had antibiotics steroids X-rays showed nothing, changed my steriod inhaler to long acting one which helped with no air feeling at least.

Then 2019 August they found the haemophilus influenzae and never quite right for long since. I hear you yogert thing, Im so glad they are helping you and keeping you well and out of hospital.

Im more and more thinking after reading everyones reply these seem to help more often than not and what have i got to lose other than maybe finally feeling normal again.

through covid times espically when i get worse and literally cant stop coughing up mucus, I hate leaving the house cos worried about coughing and people looking/glaring at me thinking its covid.

Thank you for replying and helping me with my decision on these.

Maximonkey profile image
Maximonkey in reply to Polly44

Hi Polly, you very welcome. If you have any other worries don't hesitate to ask, someone on the forum will try and help. take care, Maximonkey

I’m 3x a week & 5 mg prednisone daily for maintenance. Along with 10 other meds

Polly44 profile image
Polly44 in reply to Maricopa

sorry must have missed your reply, thanks for that , I hope they are helping you

I have been on Azithromycin for years. I also go to Outpatient Infusion once a month to keep up my immune system.

This past summer I was admitted to a hospital with abdominal pain. It took the doctors days to find out I had a purforated appendix. My surgeon said that between the Az and my monthly IV for my immune system, my body was fighting the infection and I didn't show the classic signs for a bad appendix.

So the Az and immune med has kept my immune system high and I have less infections.

Beth

Polly44 profile image
Polly44 in reply to Beth1949

HI Beth oh wow, good thing its working but glad they got to bottom of it about appendix

Hello Polly,

Three days a week for me. That seems to be common. I've been on them for almost a decade. xx 👋😄

Polly44 profile image
Polly44 in reply to Caspiana

Hi Caspiana wow you have been on them a long time, assuming they must be working for you. It sounds like more often than not they seem to work for most people. x

TAKING it fo 6 yes and great improvement over infections. It works for me.

Polly44 profile image
Polly44 in reply to hallentine47

Hi hallentine Im glad they are working for you, thank you for taking the time to let me know your experience on these

Just to add my two pennies worth Polly44 after reading the whole post & replies (phew). Your history is similar to mine with acid reflux (which started in 1979 from extreme grief when little brother was killed), worsening asthma & constant infections needing constant antibiotics. I also had pneumonia 5 times over 18/24 months I think the 1st was Feb 2010.

Every appointment at GP was an emergency one so I saw a different one each time & it was ages before I happened to see the best GP in the practice Dr Bailey (bless him forevermore) who referred me to consultant. When I refused to go to hospital for a pneumonia on 19.12.10 (I'd just arranged her dad's funeral with my heavily pregnant, distraught daughter & couldn't abandon the kids), I begged Dr Bailey for antibiotics & promised that I'd go to A&E if I got worse. I recall sats were 90 that day but had no idea what that meant. He gave me Azithromycin 500mgs to take on 4 consecutive days, then none for 7 days then follow that pattern 3 more time so a total of 40 days. (I always got the trots on the 4th day of Azith only but remember, 500mgs is a high dose, no acid reflux though). It worked though. I was very naive about being proactive then so it was a further 2 years of constant infection/abs before I asked why my referral hadn't come through. The only thing that worked was that long course of Azith 4 days on & 7 days off, once I did the course twice ie total 80 days.

Fast forward to now, I've had three winters of Azith 250mgs (Mon Wed Sat) Nov to April and not one chronic infection.

So I'd say it's absolutely worth a go.

Due to all those pneumonia & infections I developed further lung damage culminating in bronchiectasis (or small airways disease depending on which doc). & for last 4/5 years CFS. It could all have been avoided if treated properly in the beginning grrr but c'est la vie.

What I've learnt

1) best advice on this forum in 2013 : that my immune system would be shot to pieces and useless for fighting off any passing bug. I now take plenty of vitamins/minerals/supplements to keep it fighting fit.

2) Dr Bailey once said that the 4 on 7 off worked because Azith stays in the system some time after the 4 days on and for a time after the long course.

3) the consultant (a professor at a University hospital, a vile vile man) scoffed at the use of Azith saying it does nothing but dry up the mucus! Maybe there is something in that, I've no idea I just know that it was utterly brilliant both used like a 500mg antibiotic back in 2012/13 and as a 250mg prophylactic (for me in the winter months only).

4) Azith has never affected my acid reflux however, I learnt to always take it with a bit of food.

Now I've written an essay! Good luck

Polly44 profile image
Polly44 in reply to peege

Hi Peege Im glad to hear these have finally sorted things out for you (sorry to hear the long term damage all this has caused because not treated right in the beginning, I can so relate to that also). maybe Im kidding myself but i often wonder if my doctors had bothered even getting me to do a simple mucus sample sooner (2 trainee docs said al signs were there) that after have HI for 2 yrs untreated I might not be where now be where I am today.

As you say c'est la vie. we can't change what they did or did not do now eh. Re your vile consultant I would be happy if it just dried up the mucus even 🤣. That has been my main problem since all this started and cant help thinking if i didnt have that constantly maybe I wouldn't keep getting all the infections. My problem was I was so unsure if i needed the antibiotics yet / and having them constantly (most seem to take them every other day 3 days long term. I think because on paper Ive only had 3 guaranteed infections over couple yrs . The rest was not tested as I had to be doctor myself guess if infection of just mucus through covid times as testing/hell even seeing a doctor i barely do now (Im sure was infections a-lot if not all of them times through covid or ones that were being stubborn cos wasn't being tested or given right antibiotics for right infection.

But what I do know is A) so sick of living like this, its lets guess if this is just mucus making me wake up coughing and wheeze right now or infection, lucky if i get rid of both for couple weeks max after antibiotics , even now Im thinking do i need to put in another test yet (literally just had 3 weeks worth antibiotics 2000mg a day 2-3 weeks ago max. so what have I got to lose by giving these a go (might even feel normal again ha ha). Also if i don't try anything then I will probably end up with long term damage also with all the infections eh. (by ct scan last yr everything seems ok atm even if i don't feel like it. I was relieved was nothing wrong from results but I feel anything but normal 90% of the time.

So I am definitely going to give these ago, when the consultant finally gives me another appointment. Im pretty sure he bounced me because he was busy as I walked round with my mobile and land line phone and had no calls. My only other thing which i would like to know is about drinking on these. I am a social drinker and enjoy going out on a Saturday night with my partner and do enjoy a bottle of wine when out (blushes I know this is not in moderation damn that word ha ha). I must add I do not have a drink problem promise, currently dieting and not had a drop in 3 weeks and then was on antibiotics for 3 weeks before that I have never risked them not working as well by drinking on them but.... I do enjoy a drink on a weekend and go all inclusive on holidays so I can hat lots of yummy cocktails, so does that mean I can not do this anymore on these if on them constantly ever other day.

Thank you for taking the time to tell me your experience and Im the queen of essays ha ha. I can defintly talk/type for England 😂 x

peege profile image
peege in reply to Polly44

So pleased you're going to give them ago, you've so much to gain if they work for you. I'm convinced that in the Azith keeping me infection free my immune system has greatly improved. Last weekend there was a family gathering to watch my 2 little granddaughters in a play, most of us wore masks but everyone came down with a dreadful cold, one aunt taking to her bed. I just had a snuffle (copious drinks on effervescent Vitamin C daily all week). Quite proud of myself.It's just appalling that you were allowed have HI for two years! Its shocking really what some GPS get away with. 😘

Polly44 profile image
Polly44 in reply to peege

Ahh defo sounds like it was working for you (glad you escaped the cold mostly , hope your aunt feels better soon). Its funny you should say about it helping not get illnesses as i saw a couple of weeks ago a man on here saying him and his wife came down with covid recently and his wife is poorly with it and his symptoms and mild like a cold he is fine with paracetamol he is convinced its the azith that stopped him getting worse covid symptoms.

My doctors well before i saw the trainee doctor a regular doctor told me next step was to try copd drugs on me (i don't even have copd ) so gawd knows where i would be now if hadn't seen a trainee doctor who actually bothered to look into my symptoms properly eh.

I cried and was so relieved when finally a week later after trainee doc told me to put sample in i finally knew was the problem was .... little did i know how hard it was going to be to get rid of it , obviously in the 2 yrs he had made a nice home in my lungs and had kids and grandkids ha ha.

They found the HI in the august 2019 and after gawd knows how many antibiotics later by the November i was going over to Nz to see my son who lives there and before i left the infection had gone from 2 to 1 they said, I took 2 weeks of antibiotics with me to take first 2 weeks, I was thinking that might finally finish it off.... by the time i came back end of November i not only still had it i had picked up Moraxella catarrhalis, so then was getting rid of that too, then covid hit and had to play doctor myself with telephone appointments and no testing till this yr had one test clear , then couple months later another infection different one.

I spoke to my doctors practice manager in November (took me from September to November for her to finally get the messages left by trainee doctor and reception staff funnily enough never got any of them. I caught her by chance when i called up when i got back from nz, she told me she was going to look into why I never was tested etc she would get back to me in 2 weeks (never heard from her again. She now picks up the phone sometimes know its her by name and even what she manages to get done for me (couldn't be more helpful ha ha) I wonder why eh.

I don't bother saying anything whats the point eh its done now just need to hopefully finally nip these infections in the bud now eh :) xx

peege profile image
peege in reply to Polly44

I do think your immune system will also be shot to pieces.I also take prebiotics when on antibiotics to make sure gut flora (important for immunity ) isn't killed of as well as bugs.

Take care MrsPolly44 ××

Polly44 profile image
Polly44 in reply to peege

Yeah I always take Probiotics with antibiotics (learnt the hard way ha ha) and you take care :) xx

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