0 Votes
21 Answers
Getting to Know You...

Hello everyone I am Kandy from South Dakota. Been sick most my life asthmatic overlapping copd, chronic bronchitis every year. Found I had bronchiectasis in 2014. Many end of life predictions starting at 10 yrs old. 1997 very sick told to get my affairs …

Author: Gretchen
0 Votes
19 Answers
Anyone on here taking montelukast, ICS, or biologics?

I have taken singulair for years steroids of course and I get xolair shots every two weeks for allergic asthma since 2003. I don't have high eosinophilis.

Author: ksuzanne
0 Votes
9 Answers
Do others have recurring flareups in the form of pleurisy?

My most frequent exacerbations show up as pleuritic pain, sometimes accompanied by extra lung congestion, sometimes accompanied by fever. Usually 1 or 2 days of extra tiredness. I generally rest, apply heat, take Advil, maybe extra Mucinex. But I just …

Author: Connie
0 Votes
5 Answers
Anyone taking Arikayce? At $13,000 a month, how do you pay for it?

Hope someone out there can help. I’ve been on heavy doses of 3 antibiotics since Jan of 2017 for MAC. Sputum still showing positive and showing on CT 3 weeks ago. My MAC doc prescribed Arikayce as an addition but the insurance company has denied coverage …

Author: Jenny
0 Votes
3 Answers
Are you on Arikayce and interested in sharing your story?

Insmed is kicking off their branded Patient Ambassador Program and is looking for potential patients who are currently prescribed this medication and interested in sharing their story with others to help increase awareness of MAC lung disease and …

Author: Delia
0 Votes
1 Answers
MAC & abscessus/bolettii, treating MAC...?

I'm being treated for MAC. My latest culture was negative for MAC so I will stop treatment in April. However it still show abscessus.....I still don't understand why this is not being treated. Is it possible for the abscessus to not be dominant and, …

Author: Tracer
0 Votes
2 Answers
Advice on Nausea Side Effects.

I have just started taking meds for Bronchiectasis-NTM. 3x Ethambutol 400mgs, 2x Rifampicin 300mgs and 1 x Azithromycin 3 days a week.I feel so sick and that was my first day on them, I have been told I will be on them for 18mths, will it get better?? …

Author: Kim S
0 Votes
5 Answers
When to start antibiotic?

Hi everyone. I found this question on an online bronchiectasis forum that I follow and I would like to know your experience about "when to start antibiotic". When do you start antibiotics? How do you know if you have exacerbation? What is the antibiotic …

0 Votes
4 Answers
I am new to all of it... Bronchiectasis, NTM, New York resident in need of help.

Hi, I am glad i found this board. I am a 30 yr old male in New York City. I was born with pectus excavatum (sunken chest) which never gave me too many problems. I had about 4 pneumonias in my 20's... After the last pneumonia a year ago, i was given a CT …

Author: mondragon
0 Votes
11 Answers
How do you feel about states re-opening?

Are you ready to go out and about? Are you feeling anxiety about the masses? I live in Alexandria, VA and any store I go into has patrons wearing masks. I see images on the news where people are not social distancing and not wearing masks. How do you …

Author: Gretchen
0 Votes
13 Answers
Cannabis for Bronchiectasis?

Hello, I am looking for different treatment options for my mother who has Bronchietasis. I was wondering if anyone has tried cannabis (cbd oil, edibles, etc.) for their Bronchietasis? Obviously I feel like smoking cannabis would be counter productive but …

Author: Jadew
0 Votes
9 Answers
How cautious must you be with water?

Diagnosed with bronchiectasis & NTM abscessus/boletti. So confused as to what part water plays in this disease. I've read different things and not sure what's being too cautious or not cautious enough. One article recommended "whole house water …

Author: Tracer
0 Votes
4 Answers
Re: Clofazamine

Hi everyone, my MAC is back for the third time and my local doc is talking to National Jewish about adding Clofazamine to my other 3 meds. It really looks scary the way it turns your skin colors 75-100% of the time. Has anyone else taken this. Are there …

Author: KC
0 Votes
4 Answers
Halotherapy (Salt Room Therapy)

Hello! I was wondering if anybody had ever tried Halotherapy (Dry Salt Therapy) for their Bronchiectasis? My Infectious Disease doctor suggested it as something to try. https://www.saltchamberinc.com/salt-therapy-halotherapy/ Thoughts?

Author: Gumby
0 Votes
2 Answers
HUMIDIFIER - Warm or Cool Mist?

I'm wondering if it is helpful to run a humidifier while sleeping to aid in better sleep? If so, warm or cool mist? Only distilled water?

Author: KON
0 Votes
4 Answers
big 3 question

Is it unusual to take the Big 3 daily with no "days off"? I keep reading people talking about their "days off" but my understanding is that I'll be taking these drugs daily. There was no mention of "days off"

Author: Tracer
0 Votes
6 Answers
Flying with Bronchiecstasis

My husband wants to celebrate our 50th Anniversary in Hawaii. We live on the East Coast. I have flown many times, and have had bronch for many years. I never knew this I had it til 2014. Well now I do clearence, no cough, have had exerbations, and …

Author: Cathlin
0 Votes
0 This question has no answers.
Bronchiectasis and Tracheobronchomalacia

Hello, I have both Bronchiectasis and Tracheobronchomalacia (TBM). I do have a daily routine to keep my mucus thinned, but my bigger concern is the TBM. Sometimes my coughing is so hard trying to clean out the mucus that I've even caused petechiae eye. I …

Author: Clee
0 Votes
8 Answers
Has anyone tried N-A-C or Quercetin (two different OTC supplement) to reduce mucus production?

Good morning! There was an article posted a while back that talked about NAC and Bronchiectasis, it may be something helpful with asking your doctor if it may be right for you. https://bronchiectasisnewstoday.com/2019/05/09/n-a...

Author: JayNYC
0 Votes
7 Answers
Who uses Mucomyst? Please share experiences, thanks.

I used it for some years its strong and smells awful but it does the trick. I had the 2.0 I do believe. Some ppl it maybe to strong and really irritate the airways. Now I have hypertonic saline much better than this. There is a supplement that does the …

Author: suelipton
0 Votes
13 Answers
Young age at diagnosis

On one of my asthma support groups a 2 yr old was diagnosed I never heard of one that young.

Author: Rachel
0 Votes
1 Answers
HCP and bronchiectatsis

How many on this forum are HCP with bronchiectasis? I am an RN.

Author: oklawoman
0 Votes
3 Answers
I know indoor pools not advised -- is outdoor ok if don't put face in ?

Wondering what advice u got re outdoor pools.

Author: Kiddo
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0 Votes
1 Answers
Did your bronchiectasis go away on CT?

I got my first ct with contrast last may/june and it showed emphysema, mild, diffuse, bronciecstasis and lung scarring upper lobe, nodule and infiltrates.My pulmonologist remarked my spirometry in may did not look that bad considering my current year …

Author: ksuzanne
0 Votes
2 Answers
new diagnosis, so many questions..

My near 80 yr old father was recently diagnosed with Bronchiecstesis and MAC. He saw an infectious disease specialist today and she put him on the "big 3" on a daily regimen. His latest scan shows cavitation. So far his only symptoms are chronic cough, …

Author: LAT
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