Hi everyone. Sorry haven't been in touch for ages but have had other, more demanding problems with my health. However, my bronchiectasis has become less manageable too. The consultant has suggested using azithromycin, long term, to help with improving quality of life. He has suggested 3 days per week taking 500mg per day of azithromycin. The way I do that, is up to me - ie take it 3 days in a row with four days off or take it every other day with two days off say at the weekend (for example Mon, Wed, Frid taking, with Tues, Thurs and Sat and Sunday off).
I was wondering if anyone else has used this drug and how you have gotten on with it - any side effects, benefits, etc.,etc.
Many thanks, once more for 'being there' - it is so comforting to know that others understand and care.
Swimmer
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swimmer
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Hi, I was eventually diagnosed 5 years ago and was given numerous drugs to take including azyth, I take mon, wed, fri. Been fine on them with no side affects but I dont know what they do or if they do me any good because have always took them with my other medication, obviously doing me no harn though, good luck xx
My consultant told me it can cause hearing loss which goes back to normal when you stop the medication but ive never come across any6one who has had that happen just be aware of it x....sorry to have alarmed you x
Im very surprised your consultant didnt mention it mine told me half a dozen times....i have also never heard anyone using them 3 days in a row as your consultant suggested x
Hi again. No, definitely no mention of hearing loss whatsoever. I am sure I would have remembered if he had as my hearing is especially good to the point where I could be described as having hyperacusis. I asked him about antibiotic resistance, though, as there is so much in the media about this at present. Consultant said that that was not usually a problem..... The regimen of three days in a row was an option but using the drug on alternate days was, generally, better tolerated he said.
Hi again. I will take them as soon as I can get someone to prescribe them. The Consultant gave me a prescription request form for the Azith, but my GP said he could not prescribe them as they have to be prescribed by a secondary care practitioner. I live in West Dorset where this drug is part of the Traffic Light Scheme and is designated as being 'red' and, therefore, only prescribible (is that a word?...) by a consultant or similar. I am now trying to sort this out. Big sigh!!
That's sounds all very complicated. My consultant prescribed them, now my GP just does repeats. But then in my area the respiratory team take care of everything, I very rarely see my GP.
helloI too have not been on here of late, I take 250mg of Azithromycin every day, at first I did get a muffled sound in my ear (liking to having water in it ) so was taken off as a precaution, had an hearing test done, and syringed, everything was fine, so resumed taking them, everything been fine so far.
my chest specialist definitely told me about the hearing loss before I got the prescription from the hospital,so I would ask when you are next in clinic before taking them. hope all goes well for you .
Thanks poeticlady. Will definitely ask about the hearing loss risk.
Kind regards
I'll have to mention the hearing problem to my consultant next time I see her. I've been on Azith three days a week since 2012, and didn't have any problems with it. But recently I've been having the same sensation as poeticlady. When I first get up my hearing is OK, but it builds up during the day. Very strange. The only time I don't take it is when I'm in hospital on IVs.
My consultant suggested I try Azithromycin three days a month but I had to I stop due to severe stomach cramps and wind. I should possibly have tried again but never fancied it.
Ahh - something else to look forward to - medicine often seems to be a toss up between one ghastly symptom or another. In other responses to my question, people have said that they had to take the azith capsules on an empty stomach and that on the days they weren't taking azith they took probiotics to ease any stomach upsets. Have you/could you consider doing that?
I have been taking 250mg Azith daily for a few years now with no noticeable side effects and a definite reduction in chect infections. Hope it works for you. Liz
Hi Swimmer Yes I take 250mg daily. The risk of antibiotice resistance as I understand it is not an individual issue. When I wasn't taking Az daily I was getting far more infections so was having a lot more courses of antibiotics and steroids so this is preferable for me.
Sorry for the delay in replying, but have been 'bad' again. Am not sure what you mean by antibio resistance not being an individual issue...? Will look it up on the internet.
I have had two periods on azi three days a week (Mon, Weds, Fri) for 9 months, with a summer break then back on over the winter. i know some people cannot tolerate it, but It has been a brilliant drug for me. Not one noticeable side effect at all, and best of all no cough. I do mean literally no cough at all for almost all of the time, and no return of the cough during the summer break. they seem to reduce mucus production as well as fighting infection. Consultant has now taken me off them for the time being until the bronchiectasis flares up. He thinks there is no point taking a drug, which may have harmful effects - liver function was mentioned as a slight risk to me - if it is not needed.
I don't think antibiotic resistance is an individual thing, particularly if you have an illness that will benefit. It is you who we need to keep the antibiotics for, and the problem is the profligate use of them for non-bacterial illness or even worse the use of them in animal feeds.
Thanks so much for your kind and detailed response. I will try the azith and see how I get on. I have a complicated medical history so that's why I am nervous of taking anything that may aggravate my other problems. My quality of life has been almost non-existent at times and I am, therefore, very wary of anything that may make this worse.
My son takes it, and has done for about 7 years. When he first started taking it he felt sick, so he now takes them just before he goes to sleep and he is fine.He takes them mon wed and fri.
Hi, Azith worked wonders for me for about 3 years. It stopped the awful infections ( although i still had a few they were never as bad as before azith) I believe it gave me a much better quality of life and I would still be taking it today if I hadn't started with an allergic reaction to it. I don't know why this happened but since the first bad reaction and being taken off azith I have had infection after infection and felt as bad as i used to feel 4 years ago. The doc has tried Doxycyclin, Euthromycin (please excuse spelling) but my body has decided its allergic to these too as well as any penicillin. I don't know if the long term antibiotic use has made my body behave this way or not but I would definitely recommend trying azith as when it's working well it is fantastic.
I wish you all the very best with your health and would definitely recommend, huffing and other forms of mucus clearing aswell alongside your other meds.
I can take doxy and amoxycillin, but Erythromycin always gives me reflux and sickness. But my hospital medics are loath to give me 'on the shelf' antibiotics to keep at home, as according to them I always present with pseudomonas so need IVs. Strange thing is, that out of 3 sputum samples and countless blood tests when in hospital recently, they didn't grow any bugs, but they still claim it was pseudo + pneumonia.
My GP has just prescribed Azy to me after I told him I had read about it here and other forums. The dosage is 250 mg 3 times per week. No mention of hearing loss although he did refer to the possibility of anti biotic resistance. Anyway I'm happy to give it a go to see if if reduces my flare-ups. I'll keep you all posted. Thanks again to all for the warmth and support. And good luck Swimmer!
I use this, Monday, Wednesday Friday and I can honestly say its changed my life. There are people that don't get on with it at all and can't tolerate it but in the last year I have had only 2 infections. I've been on it for around 2.5 years with no apparent effects. I have very acute hearing an I haven't noticed any difference.
I have taken Azi for well over 20 yrs have had Bronchiectasis since birth, I thought when I first took it , that is was a miracle drug, as instead of getting chest infections every 3=5 months I went for a whole year without one , as the years have gone on it has not worked quite so well as I now get them every 6-9 months but still a MASSIVE improvement. I do however have hearing loss and now have to wear a hearing aid when talking to people or watching the TV etc. but keeping my lungs free from infections is my TOP priority and it should be yours I think Swimmer. If you don't get regular chest infections then you can perhaps delay taking the Azi, but be guided by your Consultant. Good luck
Hi there, as I understand it Clarithromycin & Azithromycin do much the same thing. I currently take 2x500mg Clarithromycin a day, 3 days a week. Def; getting less infections although I still get 'flare-ups', wheezing and rattling through one at the moment, lol, for which I've had to start my emergency pack of Doxycycline.
Unfortunately I already have hearing problems, stone deaf in one ear, slight loss of hearing in the other which Clarithromycin has muffled even further. The consultant I saw last week was sympathetic but said I'd need to consider if the protection Clarith; provides was worth this negative aspect. No brainer really.
Delilah...does Clarithromycin give you a nasty taste in your mouth? and a very dry mouth ? I am on my 5th course of antibiotics to cure a persistant chest infection I have, so now on Clari 500.....I don't like this AB ( had it before) as it makes me feel a little sick with this nasty taste and dry mouth...these symptoms are not enough to cause me to stop the Clari...If this does not clear it its into hospital for IV for me.....
I do take 3 x times a week Azithromycin which I have NO problem with, but whereas at first I thought it was a miracle drug ( no infection for 9 months) its effect has worn off a bit and I do get them now and again even on the Azi
Difficult for me to tell Sohara, haven't noticed a bad taste but I also have Sjorgrens Syndrome and that's a bit of a nightmare to cope with. Eyes are not too troublesome but my mouth and throat produce no moisture at all, ever, I have to carry a bottle of water with me wherever I go. Clarith; might well be contributing to that but I've no way of knowing.
Sjogren's causes all kinds of problems when you have a lung condition. It makes it harder for me to cough up sputum. My eyes are dreadful (blind in one but now also got a cataract) so I'm pretty much a half blind, deaf old woman who has mobility problems. Now do I laugh or cry - whoops, no, can't cry. No tears!!
Ahh - that 's slightly worrying as I have used clarithromycin before and it made me feel quite poorly. It is the only a/biotic to do that, so time will tell if I can tolerate it. It may be that the bad side effects wear off after time, so will give it a good go! Losing my hearing - when I have lost so many other things might be less acceptable though...
I did this for several years but consultant decided it was needed to be kept in reserve for an emergency antibiotic for a particular bug so it was stopped. I had no side effects and felt much better whilst taking it. I hope it suits you too. Good luck. 💐
I took the 3 a week option for six months. Brilliant turned my life around. I had to have blood tests every couple of months to check liver function. Hearing problems were mentioned but fortunately I had no bad effects. Originally I was coughing all the time and exacerbation every month. I stopped taking them last September and have not had one infection since. Give it a try I believe there will be no long term problem and I wish you good luck that it works as well for you as it did for me. barnowl
Thanks so much barnow1 for your very positive and kind reply. I hope it will be as good for me as it has been for you. I could certainly do with some respite from all these nasty symptoms.
No, Mike, I don't think I am similar... I have bronchiectasis which was diagnosed 3 years ago. I cannot take steroids as I have severe osteoporosis and have had several fractures over the years. Steroids are renowned for thinning bone...
Hi Swimmer,been taking azithromysin for about six months 3x a week.I found when I did,nt take my pro-biotics I got bad indigestion.Had liver function test which was clear and no other side effects and kept infections at bay so I,m happy with it,hope you are too.Good luck.D.
Hi, I did reply to you last Sat but maybe because it was a weekend, my post did not get processed. Thanks for the advice on probiotics and liver function tests - really helpful.
Hi there, this is the first time I have used Health Unlocked but wanted to reply. I was put on Azithromycin for bronchiectasis for a while. I had side effects to start with but settled on to it and began not to notice anything. I took it 3 times a week - every other day. Happily much better now with the better weather. Perhaps you could look into countering the bad effects of regular antibiotics with 'pro biotics', 'tho I don't know much about them. Good luck.
I did reply to you last Saturday but not sure the post reached you. Well done for getting in touch for the first time. I find this forum hugely helpful, hope you do too. Thanks also for your probiotic advice.
I have been on Azithromycin every other day. Consultant told me to take one every day and since doing so my tinnitus is driving me crazy. Decided to cut back down to one every other day and see if that helps.
Hello Swimmer I am so glad you brought up this subject as it is good to know so many other people have been prescribed Azithromycin. I have Sarcoidosis of the lungs and was in hospital with a chest infection 5 times in 2012. It was eventually got rid of with an intravenous antibiotic three times a day. The last time was in Royal Brompton Hospital and on going home I was prescribed Azithromycin 250mg Mondays, Wednesdays, and Fridays which I have taken non-stop since (for two years). A couple of consultants at Royal Brompton have said I could stop them in the summer months but as they do not cause me any trouble that I know of I take them for the whole year. I have had no problems with Azithromycin that I know of and it has kept lung infections at bay. If I have been with people with a cold or similar I make doubly sure and gargle with a solution of TCP for a couple of days and squirt First Defence (available from chemists) into my nose three or four times a day for a couple of days. No consultant in the last 2 years has mentioned the possibility of hearing loss and I have not experienced that. It is good to learn from others about probiotics and I will look into buying some. Thank you everyone for your replies to Swimmer. They have been so reassuring.
Hi - sent you a long post last Saturday, but not sure if you received it...
Thanks for your kind and comprehensive advice. I cannot use any nasal products due to a car accident. My sister though, also uses First Defence and a nasal fllush device whiich she finds really helpful.
Hi Swimmer, I guess it is down to how ill you feel. I was getting infections monthly and pneumonia around 3 monthly and I was going down hill fast so the thought of no more infections because I was taking a pill three times a week was music to my ears. I have had no side effects but after 2.5 years I have developed Tinnitus although my ENT specialist says it is not related to Azithromycin but is due to my suffering 40 years of sinusitis. (It is not life threatening and I can live with it) I would recommend Azithromycin in a heartbeat, without Azith I would probably be dead by now as the last dose of pneumonia was so bad my organs started to close down and my husband thought he was losing me. I was just out of it thankfully. No-one has told you what their quality of life is now after Azith, I can go to Aqua aerobics now and exercise, something which I could not do before because of all the infections present at local baths and I can lead an ordinary life, no more coughing every few minutes or breathlessness. My skin has a healthy glow and friends cannot get over how well I look. Yes I do tire more easily but I probably would be the same anyway as I am now 68 years old. I have had 3 infections in the past 2 years, all without going to hospital, bliss. Take care of yourself. Maximonkey
Did reply to you over a week ago but not sure if it got processed as it was a Saturday...? My quality of life is almost intolerable sometimes but I have to keep going as I have a daughter who relies on me. It would be great if I get the good results you experience with Azith - I still haven't been given a prescription though due to communication issues in the NHS - very frustrating! Will let everyone know if and when I have tried Azith - so fingers crossed that will be very soon.
Hi Swimmer, don't know what happened to your reply, I have only just received it. Anyway. When are you due to see your Consultant? He/she is the one who will decide whether you are able to take Azithromycin. If you are not due to see the Con soon go to your GP and say you cannot go on this way. That is what I did and because my doc knew what I had been through he telephone the Consultant himself and they sorted it out. I definitely believe you have to do things sometimes over and over again before they are done. I understand you have other health problems I do too, as do many of us on the forum. From my point of view I had no choice, take the Azith and hopefully get better or die. Sorry if I sound dramatic but I was that seriously ill. Azith is my life saver and I thank God and the experts for it. Good luck and do not give up, keep pestering if you have to. For instance, I have had a pain problem for over 2yrs and have been asking for help. I have exercised everyday and done everything else the docs told me to. Today I went to see my GP and just mentioned the pain problem in passing and she immediately said I could have injections if I needed them. I guess the moral is do not stop asking, keep reminding them you need help. Anyway bye for now, hope things are soon resolved and that you start feeling better soon. Maximonkey
I take azithromycin 500 mg tablets 1 tab 3x a wk on Mon. We'd, Fri. with breakfast, in addition to 2 other antibiotics long term for Pulmonary MAC (mico bacterium Avium intracellulare which caused bronchiectasis. I have been in this regime for just a month so far but will be on it for at least a yr and a half, which I was 5 yrs ago when I first developed the MAC. Up until that time I was perfectly healthy and still have a good quality of life, thank God and thank the good doctors. I have gotten several opinions and feel confident that this is the normal treatment protocol in the USA.
Although I live in NH and see a Pulmonologist in Boston, Mass. My last episode of bleeding, which doctor called a bronchiectasis flare, took place in Florida a month ago. The Fl doctors and my Boston doctor were in total agreement regarding the treatment plan. I hope this helps and I send my best wishes to you. I might add I am taking the exact same antibiotics and in the same way that I did 5 yrs ago. While in Florida I was also dx'd as having AFib so am on blood thinner Eloquis and Coreg also in the past mos. Thankfully my body seems to be tolerating all of this presently. Blessings, Mary10
Did send you a reply last Saturday, but not sure it got through..?
You are so lucky to live in Florida; I have visited several times, although not for many years. I really loved it.
It sounds like you are getting great care in the U.S. However, although highly skilled and dedicated, NHS staff are really struggling here, with the result that patients are suffering by not getting the treatments they need when they need them. I may have to spend my limited savings on private treatment because my quality of life is deteriorating, to the point of intolerance, whilst I wait, often for months, to receive treatment.
Thanks also for your blessings - any divine intervention, gratefully received.
yes i have been on it since last year i take it spread out through the week at night but unfortunately i have had 5 chest infections since last October so its questionable if it is doing me any good really ? i have had one side effect itchy skin so i take Antihistamine when that happens but other than that i am ok on it
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