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
15 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
2 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
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
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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
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
Tags:
0 Votes
1 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
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
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
1 Answers
Big 3

I'm new here. Keep seeing Big 3. What is that?

Author: netmouse
Tags:
0 Votes
3 Answers
how to take probiotic with Big 3 & safe to take vit. c,d, omega3 & zinc?

drug interactions with suppliments

Author: Tracer
0 Votes
2 Answers
What is the usual dosage for the Big 3?

big 3 dosage I feel like what I'm being prescribed is a bit high. I weigh 118 pounds and Rx is for 5 days. 600mg rifampin daily, 800 mg ethambutol 2x daily, and clarithromycin 500 mg 2x daily.

Author: Tracer
Tags:
0 Votes
1 Answers
Has anyone been diagnosed with mycobacterium gordonae?

After a year of bronchiectasis, I've finally had a sputum culture positive for mycobacterium gordonae . Has anyone been treated for this? If yes, what drugs, what length of time, and what results. Thanks,

Author: KarenU
0 Votes
2 Answers
Organ donation

Go to there website I have it on my drivers license. I don't know what they would want I think everything is wore out. https://www.organdonor.gov/register.html?gclid=CjwKCAiAi4fwBRBxEiwAEO8_Hlmx_67Sp-Z-EoX-ItMQQ6pI …

0 Votes
4 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
7 Answers
Clofazamine

I will be starting taking Clofazamine soon and am wondering if anyone else has had experience taking it. I am interested in any tips on dealing with side effects and what sort of side effects you had. (I am being treated for mycobacteria abscessus.)

Author: Deb19
0 Votes
2 Answers
Just getting started

I am an older woman with a lifelong history of respiratory allergies with frequently recurring dry cough, and a tendency for colds to develop into bronchitis. I also have Crohns colitis, which spreads occasionally to my upper GI, and have been in …

Author: lmb100
0 Votes
6 Answers
Top Centers for MAI Treatment?

Hi I was recently diagnosed with MAI And live in a rural area...Two Pulmonologist’s that I’ve traveled to have said not to seek treatment because of side effects...Now a third says that I should get treatment....Where are the top places to go for …

Author: suze
0 Votes
1 Answers
advice for taking the Big 3?

Will be starting treatment after the holidays. Just hoping for some advice, dos and don'ts for taking these. Not sure if it will be 3 days a week or 5. Will know more next week. If anyone has some advice I'm all ears.....or eyes in this case! :)

Author: Tracer
0 Votes
6 Answers
Anyone treated with augmentin antibiotic?

Anyone found it to be helpful? I'm done with it but really didn't seem to help other than mucus is clear now. Shortly after taking my dose I seemed to get more throat and sinus inflammation. My doc prescribed this along with pred for a sinus infection …

Author: ksuzanne
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