Hi everyone, I have recently been dia... - British Lung Foun...

British Lung Foundation

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Hi everyone, I have recently been diagnosed with mild to moderate Bronchiectasis.

Maximonkey profile image
Maximonkey

This week the Consultant has put me on Azithromycin for 1wk and then every Mon, Wed and Fri following. I believe from the Consultant that this regime of drugs has had good results with patients, who like me, suffer from recurring lung infections. Has anyone out there any info to add. Maximonkey

14 Replies

Hi there maxi,

My dad got offered it for his IPF but specialist didn't recommend it to him saying it wouldn't do him any good and the side effects far outweighed any benefit he would have. The specialist was crap tho and now dad has gone private.

I did some research on it though and I didn't like the sound of it for him, but dad had IPF and Emphysema so maybe it works better for Bronchiectasis. We do dispense quite a bit of it in the chemist where I work. Trial and error maybe?

Hi Maxi

I don't know if this will help you as everyone is different but we had a Nutritionist attend our Breathe Easy group today. Very interesting as her father was diagnosed with COPD and had constant chest infections and of course loads of gunk to bring up. After research, she suggested he tried to keep off dairy products and change his diet from one heavily based on red meat, and this seems to have helped him in that there is less gunk to come up and his infections seem to have lessened.

Some 5 years ago I had a free consultation with a nutrionist and she had reccommended a similar diet for me. Actually it was very similar diet to one I had read about for treating arthritis in a natural way and relies on a sort of mediterranean diet - veg's, fish, white meat, occasional red meat, no dairy, (little or no substitute for cheddar!) and seemed to help me with the arthritis but then I hadn't been diagnosed with this dread disease then!

Might be worth a try? Doesn't cost anything and certainly can't loose by it either

Good luck

M

Maximonkey profile image
Maximonkey in reply to Mulie

Thanks Mulie, I eat the Med diet anyway as I cannot walk far because of a foot/spine problem and I am permanently on a diet. It works for my arthritis and as I am not a cougher, maybe the low dairy etc is working for me already. Maximonkey

I used to take azythromycin for my bronchiectasis but unfortunately it didn't keep the infections away. I now have nebulised colomycin. I would reccomend you try it as azythromycin is an accepted treatment regime for bronchiectasis. You need to combine medication with clearing your lungs and exercise. Have you done a pulmonary rehabilitation course?

Judith

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Maximonkey in reply to alanjudy

Hi alanjudy, thanks for your info. I am obviously hoping the azythromycin will work and keep the infections at bay, however, my asthmas nurse has mention the nebulised colomycin to me and my consultant, the consultant is luke warm about the neb as there is not medical trials on whether this works or not. I expect you feel as I do that I will try anything just to feel better. I am due to start physio on 18 July cannot wait. I need to get rid of all this old infected gunk. thanks again Maximonkey

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hiya

this is the best site for bronchiectasis bronchiectasis.info - there is a great deal of info and support there

but to answer your question, yes, that prophylactic dose of azith is a common treatment for recurrent infections - azith has been shown to have an anti-inflammatory effect which helps prevent your lungs being such an easy place for bugs to take up residence

x

EmmyH profile image
EmmyH in reply to Hidden

Fantastic stuff. I have bronchiectasis too, and I had repeated nasty chest infections (6-8 per year) culminating in pseudomonas which landed me in hospital. Since I have been on azithromycin (2 years) I've had just 1-2 per year - not perfect but a huge improvement.

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Maximonkey in reply to EmmyH

Hi EmmyH, thanks so much for your info it makes me feel really positive. hope I am as lucky as you. Maximonkey

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Maximonkey in reply to Hidden

Hi fairyfootsteps, yes, my doc told tme about the antiinflammortory effect. She also has three other patients like me who are all doing well on the azitth treatment. Hope I am lucky too. are you taking it? Maximonkey

i have had emphysema for almost 20 years . 2years ago i started having one infection after another and ended up with respiritory failure . i have been taking azithromycin for about 8 weeks and been infection free so far , the longest time in a long time !

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Maximonkey in reply to carol22

Hi Carol22, thanks for your positive feedback. I feel really hopeful for the future. Hope I too will be lucky and will be able to way goodbye to those horrible infections, most of which had ended with pneumonia and a spell in hospital. Keep in touch I would love to hear how you are going on. Maximonkey

Hi Chez52, the wheelchair use is because of a foot/spinal problem which is acerbating my arthritis. I also suffer from Asthma. thanks for your opinion. Maximonkey.

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Hello again

Yes I'm on azith, like you I take it Mon Wed & Fri. I also nebulise colomycin now, because I've become colonised with pseudomonas. On this regime, which I've been on for 4-5 yrs now, and with vigilant daily physio, I've found it's possible to keep bugs at bay most of the time, & I haven't had pneumonia or needed IVs in that time! My consultant suggested I have a break from the azith for a few months every summer, as long-term use could cause tinnitus or hearing problems. However if you notice any tinnitus/hearing deterioration it should resolve ok if you stop the azith for a while. Having this short break every summer has meant I haven't noticed any problem.

Hi fairyfootsteps, yes my Consultant and GP did tell me about the tinnitus side effect. So far so good. I just hope the infections are kept at bay. Nice to know any hearing changes are not permanent. Tinnitus is an awful thing. I had it once and I was really upset thinking I had it for ever. Thank goodness it was just a bad ear infection. Hope you have a trouble free summer. Are you going away for any holidays? Cheers Maximonkey

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