i am so pleased to have found a web site where i can discuss my bronchiectasis

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it is so good to be able to discuss  this condition with people who understand the problems I have had this since i was 7 which is 58 years now up until 3 years ago i managed it pretty well now i seem to have problems clearing mucus at night and it keeps me awake i usually do my breathin exercises twice a day do not use postural drainage does any one have any tips regarding sleeping that i might try as that is what is really getting me down at the moment, for the lady who was newly diagmnosed at 20 and thought she would need to give up her job dont i nused with this condition and i have worked all of the 58 years i have had it i also have 2 children when it is well managed with consultant and gp help ther is life with Bronchiectisis   

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14 Replies

  • Posted

    Hi Kathleen,

    I usually lay on my back after lunch...feet a little higher...and after around 10 minutes, it gurgles up...just in small amounts, but it all helps to clear it.

    Try lying on your left side to sleep, I find that is the best way.

    Sometimes when desparate, I suck a sugar free strepcil.

    Stem ginger helps, the stuff you can buy in supermarkets in a packet. Also the ginger balls in a jar, yum, yum, I chew one and that stops that nasty 'itch' that I sometimes get.

    I am taking Azithromycin 250mg 3 times a week,

    Blessings,

    Lesley

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    • Posted

      thanks lesley for your advice maybe you can help re the azithromycin

      my gp has put me on doxycycline all of the time but she has also given me a prescription for azithromycin which she describes has a rescue i am not sure when i should use it any thoughts

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    • Posted

      Hi Kathleen,

      The doctor needs to give you some more information, she should tell you when to take it and how much; that is a vague instruction. Also I don't think it should be taken with doxycycline. I would go back and ask her to be more precise.

      The hospital specialist prescribed my azithromycin, and the doctor gave me a repeat perscription going off the hospital's recommendation. The sputum test is the guidance to which antibiotic to take.

      I hope it helps, let me know how you get on;

      having said that, I just keep taking the tablets, the hospital haven't been in touch with me for ages....

      Blessings,

      Lesley

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    • Posted

      You really must clarify this with your GP and specialist. Doxycycline is more likely to be the 'rescue', but you need sputum tests to determine which antibiotic should be kept for emergencies so that you can start treatment without having to wait for a doctors appointment. But you would still need to send off a sputum sample to the hospital.

      azithromycin is used just one tab three times a week continuously and acts as an anti inflammatory in the lungs. However if you are going to take it long term you require an ECG first and liver function tests once you have been on it a while.

      Having said all that, azithromycin has been a godsend to me.

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    • Posted

      I had open heart surgery so i have had loads of EcgA anyway plus blood is tested on a regular basis but for some reason they lost me off the system so it looks like i cannot get an appointment with my consultant till march any way he seems to be the only doctor that seema to know what needs to be done and i even had to chase that up myself thats why its good to tslk to fellow sufferers

      many thanks

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    • Posted

      Hi lesley,

      Do you take the azithromyacin when you don't have an infection? how does it help? My doc says our bodies will get too used to it and not be effective for an infection!

      I see a lot of people are taking it!

      Cheers

      Gail

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    • Posted

      Hi, I have been taking azithromyacin for the winter, aiming to have a break when the weather warms up. Someone on this forum says that it keeps the inflamation down in the lungs. But I haven't seen the doctor for a while; he said the hospital should be contacting me, but they haven't so I will carry on for a while and follow things up 'when the weather is better'.

      I am trying to eat healthy stuff, that is, aiming to reduce inflamation with food. I believe that Onions, Leeks, Garlic, and the spices tumeric etc are great. I am getting used to them and they are also anti-cancer foods, reducing the risk considerably so it has been very interesting, learning how to cook with them. Maybe I will be able to dispense with the tablets one day.

      Blessings,

      Lesley

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    • Posted

      hope it goes well i am having to chase up my hospital consultant as i appear to have got lost in the system due to the ct scan dept i want to get clarification on azithromycin and whento take currently on 28 days of doxycyline however i have taken advice in the forum to lie down and am finding it is helping get the mucus up so thank you all taking mukana honey and as i was never taught postural drainage only deep breathing i am hoping that i can chase up a bit physio and also because it was not my fault they lost me on the system she could get me an eatlier hosptital appointment as apparently the chest clinic said ther was no capacity till March if i am supposed to manage this then i need clear guidance on my medication i have had this for 58 years but it was broncho when first diagnosed at 15 then in 1985 was supposed to be asthma then 5 years ago changed back to broncho

      joining this forum has made me feel better in both body and mind than i have felt for ages

      thank you all xxxx

      kath

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    • Posted

      Hi Kathleen,

      I feel so much better after learning to handle it myself, I feel safer being in control. Yes the forum has really helped me too!

      Blessings,

      Lesley

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    • Posted

      Hello Littlewolf. I have been on Azithromycin for 5 years none stop and it still workd for me. No flareups at all and few dr visits. Rarely have steroids either. Am working again now. i used to be on o2 therapy 24/7 but was taken off this therapy 4 years ago thanks to Azithromycin. It may not work for everyone. Exercise also important. Ask hospital for pulmary rehad course. Works brill. Yours John 
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    • Posted

      Thank you for the reply,

      so glad you are doing better and will check again with my doc. It seems a lot of people cannot tolerate this drug. Do you still have to cough up the gunk?

      Gail

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    • Posted

      Hi.....on azithromycin for 9 months now..no gunk, no coughing, no feeling unwell,(cross fingers). Last winter I had four courses of antibiotics in as many months, coughing, continous gunk etc etc. This winter despite two colds I've had no ill effects.

      I always take the azithromycin with food, but its only one pill three times a week!

      But you can't take it if you have abnormal liver function tests or a particular abnormality on your ECG...so these have to be checked from time to time.

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    • Posted

      Hi Ruthie,

      thank you for the reply. How  many mg are the azithromycin that you  take ? and how bad was your bronch before you started taking it? 

      Cheers,

      Gail

       

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    • Posted

      Hi......I take 250mgms azithromycin on Mon. Wed. and Fri. 

      It was recommended to me by the Prof I saw initially for diagnosis if my symptoms should get worse.

      After a year or so it was discovered that I was colonised by haemophilus, then I had I think 4 infections one after the other and had pseudomonas cultured and was generally feeling pretty dis-spirited, so I brought up the option of azithromycin with my consultant (my GP had never heard of this use for it!). I had an ECG and was considered fine to try it and after 6 months I had liver function tests which, thank god, were fine. I have now been on it for nearly a year...no infections, nothing to cough up, I have had routine surgery in the meantime with no ill effects on the chest.

      Good luck.

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