Just Been Diagnosed with Bronchiectasis looking for others stories and advice.

[Damali68]

Hi, I have just be diagnosed over the phone by my GP after a CT scan I have been Percrabed NACSYS 600mg dissolvable tablets I do not get a lot of mucus if any unless I have an infection; so I was wondering if I should be taken these, I have been for a week now? I do suffer from fatigue and have done for around 6 months now. I would love to hear other stories!as this is all new to me, I also have mild emphasimia and I have been asthmatic for as long as I can remember.

looking forward to hearing others stories!

Have a lovely day

Sharon

[Patsy164]

Hi Sharon, Welcome. I would advise you to post on British Lung Foundation as most Bronchiectasis suffers use that. We are a varied bunch with a large range of lung problems.

I suffer with Bronchiectasis also and have severe asthma, I was prescribed Carbocistine for helping with bringing up mucus. I have not heard of NACSYS but imagine they work the same. I only do what my consultant recommends as my GP doesn’t know as much as him.

I was diagnosed about 8 years ago and took many antibiotics and steroids. Now there is only one antibiotic that may work but I have to put a sputum sample in the hospital to be tested if the antibiotic doesnt kill the infection I have to go in hospital for iv antibiotics. I also suffer with fatigue it comes and goes with me.

There are a few Bronchs on BLF who have had it longer than I and could help you with any questions you might have. You are not alone and are a good group with lots of advice, jokes, quizzes and much more. You can participate as much or as little you want really. 😊

[Damali68 in reply to Patsy164]

Thank you Patsy164 for your advise I will post On the British Lung Foundation.

Have a Good Day 😊

[Blackcat99 in reply to Damali68]

Hello - welcome! Yes, I agree with Patsy164, BLF is a much more active forum, and you'll probably find you can get more support through it (although be aware that some of the people on it are in quite a poor state of health, so don't let that panic you, please?)

I also have bronchiectasis and a few other issues which, I am only just realising, are probably part of the bronchx scenario.

Despite that, outwith the times when I have a severe infection, I keep reasonably good health and live an active life, and I think you'll find that that is true of quite a few people who have this illness. The key for me has been to keep as active as possible, and try to expand my capabilities as much as (sensibly!) possible. I find that this really helps with the fatigue element and also, hopefully, makes me less susceptible to infections.

Like Patsy, I have Carbocistine for loosening mucus - although I have never produced much sputum, even when I had TB, many years ago. I only take the Carbocistine when I feel there is something there to be produced. I have a range of daily meds for a mild heart problem, so try not to take anything that I'm not actually needing at any given time - otherwise I start to rattle! You might want to discuss this with your own medical adviser, whenever you can get a chance to do so?

Take care, and see you on the BLF page!

[Damali68 in reply to Blackcat99]

Hi, Blackcat99 thank you for your advice, I will talk to my medical adviser. Thank you again and have a good day

[wiserlady]

May I ask how bad your fatigue is and how long it took to get to that point? I ask because I was fine a few months ago and now have terrible fatigue, also masses of mucus, no matter what I eat or drink. Inhalers and nebulisers do not really help, do they help you? I understand some people take monkelust, do you? I found the carobcistine helped at the start and now does not help at all.

[Damali68 in reply to wiserlady]

Hi, Wiserlady I only got diagnosed a week ago. so it is still all-new -

My fatigue started about 6 months ago - it is terrible - if I am busy I fine, but as soon as I stop I am asleep - I thought it was a lack of vitamin B12 - but all test came back fine.

At the moment I don't get much mucus unless I have an infection. So trying to find out how it affects others x

[Nonactive]

Hello was diagnosed 5 years ago with bronchiectisis but have many conditions..for me fatique is horrendous but that maybe is my fibro..I cannot stay infection free for many weeks unless i stay on every other day Azithromycin which i have done for nearly 5years...without it mucous production is high...

[Damali68]

Hello, Linnactive I am on Azithromycin and have been for about 2 years now because I kept getting infections - but they could not find out why. They found mild emphasimia and said I had bronchitis and asthma - but did not know why I kept getting infections. But after this last CT scan, they have now found Bronchiectasis and have prescribed me NACSYS 600mg dissolvable tablets which I have been taking for just over a week.

I have a telephone consultation on Wednesday with a limnologist I have no idea Why?

[Sops in reply to Damali68]

i may be sleepy today, often am with bronch, but i thought a limnologist is involved in water eco systems, so a bit confused.?

Welcome to the group, Sops

[Damali68 in reply to Sops]

I saw the immunologist they were checking if my repeated infection were caused by my immune system she said no after an in-depth assessment and check on all my scan and she has discharged me.

[Sops in reply to Damali68]

That is good news, I am so pleased you have been discharged, hope you will feel less tired without one less worry!

Stay safe Sopsx

[Cade1 in reply to Damali68]

Do you mean an immunologist? If so, this might be to try to help with finding out why you are so exhausted?