bronchiectasis

[amedeahuntley200]

Anyone with experience of bronchiectasis out there?

If yes, contact Amedea

[mrsmummy]

Hello amedeahuntley200 and welcome to our forum. We have members who have bronchiectasis and I am sure some will be along soon.

[cofdrop-UK]

Hi Amedea and welcome.

There are quite a few people on here with bronchiectasis, including myself. I have had it all my life - 69 years. Is there anything specific you wish to know?

Look forward to hearing from you.

love cx

[normannippy in reply to cofdrop-UK]

Hi Amedea,

I joined recently but was diagnosed in 2000. This year my Bronch has worsened so I found this site and like the feeling of not being alone. I hope it will help you too.

[cofdrop-UK in reply to normannippy]

It helps me all the time. This and Bronchiectasis R Us.

Sorry to hear your condition has worsened. Do you have a good consultant with a special interest in bronchiectasis?

You will certainly not be alone here and I am glad you joined us.

love cx

[normannippy in reply to cofdrop-UK]

Hi! My consultant is very helpful. I don’t know that he has a special interest in Bronchiectasis though. He put me on Arythromycin 3 times a week a couple of months ago but so far there is no improvement. Maybe it takes longer than that. Until this year I had lots of infections and occasional bleeding too, but I didn’t produce copious pghlegm (sorry!) all the time as I do now. Thanks for telling me about Bronchiectasis r Us. I hadn’t heard of that and will look into it.

[cofdrop-UK in reply to normannippy]

Don't worry about talking about phlegm - it's not a problem on here.

I guess you will already know, so forgive me if you do, Arythromycin being used 1 three times a week is being used prophilactically (to dampen down bacteria, especially gram neg bugs i.e those with a biofilm. They can also help with inflammation. They can be used at highter doses as a treatment. I can't tolerate the family of drugs (macrolides) but many people find they have fewer infections.

Another avenue would be nebulised antibiotics, which are also used prophelactically. Many peole with bronchiectasis are on them but again I cannot tolerate them, along with many oral abs.

Lots of mucus is frequently part and parcel of bronch, although a few people have dry bronch. I hope you have been taught lung clearance.

Hope you see an improvement soon.

cx

[normannippy in reply to cofdrop-UK]

Thank you cofdrop

[Hidden in reply to normannippy]

Hi normannippy azithromycin should've worked by now if it was going to. The idea is it reduces inflammation, so makes the mucus easier to clear AND to stop bugs growing. There's some evidence that daily doxycycline has the same effect - perhaps you could ask your consultant to try that?

[normannippy in reply to Hidden]

Thanks Hanne62!

Doxycycline doesn’t seem to work for me. I am clearer now what the Azythromycin is supposed to do so that has helped. Thanks!

[Helenamay]

Hi

I was diagnosed about the same time as you and mine is getting worse too but I have an extra mycobacterium infection which doesn't help. About once a week I seem to almost " vomit " sputum for a while. It's hard to keep going sometimes but that's what we have to do. There will be plenty of comforting advice on this site.

[normannippy in reply to Helenamay]

That sounds awful. Really sorry to hear that. I hope it improves for you.

[hoping2improve]

Hi. I have bronchiectasis ( also asthma) I take doxycillan daily

[Janlyn1953 in reply to hoping2improve]

Do you take it all the time?

I was on it a few weeks ago, felt better, then today I'm feeling poorly again I have Bronchectasis.

Back to doctor tomorrow.

[hoping2improve in reply to Janlyn1953]

Hi, yes low dose100 daily unless infection. good luck hope you get the right medication.

[Janlyn1953 in reply to hoping2improve]

Thank you, on Antibiotics.

[Hidden]

Hi Amedea, another bronch here. We have plenty of knowledge and experience between us all, to share

[cofdrop-UK in reply to Hidden]

Very true and you are one of my family of people with brochie knowledge that I 'go to.' Always willing to help despite having so much to cope with yourself.

With love

cx

[Hidden in reply to cofdrop-UK]

Aww thanks cof! You too, darling. Between us all we seem to come up with a lot of answers. I get loads of information from this site, not just from the bronchs but all the research people post, and for example, zube-UK 's post about inclined bed therapy - such a simple thing but has obviously revolutionised things for her. It's brilliant to share all this information

Amadea - here's a link to that post about inclined bed therapy healthunlocked.com/blf/post.... I think there's definitely something in this - reflux is heavily implicated in lung damage.

[cofdrop-UK in reply to Hidden]

Absolutely. I'm gonna try the inclined bed as per dear zube's link. Thought he made a lot of sense in the video. Was concerned about gunk staying put low but if you don't have a go you'll never know I guess.

cx

[mrsmummy in reply to cofdrop-UK]

I tried it and it worked wonders for me. Thanks zube-UK

[GhostlyDinosaur]

Hi Amedea,

I'm another bronch just checking in here. Diagnosed 25-8-17 but I've probably had it years.

Just getting used to the breathing exercises which clear the gunk out of my lungs, and I should be receiving a flutter device in a few days to help with that process.

At the moment my most debilitating symptom is the extreme tiredness that suddenly comes upon me and I have to lie down and sleep. (In fact I need to go and do that now.)

Wishing you all the best.

Rachel

[Shimmysue]

Hi Amedea

I too have bronch diagnosed two years ago and asthma for 25 years. Physio chest clearance really helps shift the stubborn mucous, as does exercise including yoga and walking. I take Azithromycin 3 times per week which helps reduce no of infections/flare ups but still get infections from time to time. Stay positive and lots of help and support on here. Sx

[Phil36]

Hello to you Amedea,

I was diagnosed with Bronch twelve years ago.

I think I'm quite lucky, I manage it pretty well, a regime of a puff of Symbicort twice a day, two Carbocistein three times daily and a Montelukast at night along with breathing and phlegm clearing exercises tend to keep the problem to a minimum.

Keeping clear of people with colds and flu etc. is also key although easier said than done. I tend to get lung infections quite easily but a course of Co-Amoxiclav and Predneslone soon clear that up normally.

I think you just have to keep active and be sensible. As I was told when I was first diagnosed; it's not the end of the world, keep positive and stay in touch with others in the same boat, support can be everything even if it's just to chat and vent your angst now and again.

Chin up, stay positive.

[Lealee]

Hi Amedea, also a bronch and have had asthma since childhood.