Discussions

Hi, my name is Elaine and I have the mildest form of Cylindrical Bronchiectasis.

I am breathless every day on exursion (fine when doing nothing). Often wheezy. Lately I have been bringing mucus up only once a day or not at all instead of numerous times a day.

I am waiting to do a Pulmonary Rehab course and I just wondered if the way I am is normal when you have this disease. I had a Cat Scan yesterday and am waiting to here results.

I read you should use good days to do chores etc but I don't have good days and I'm not even bad.

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, therefore, not need to be treated? Are there situations where it is not treated?

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 feel about re-entry?

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?

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?

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 scan and mild bronchiectasis was found in my upper right lobe (where my chest is sunken in.)

Throughout the last year I was in and out of the hospital for strange lung complaints such as crackles, feelings of mild illness, and mucus.

About 3 months ago I started to get nonstop mucus throughout the day, lots of it. I still didn't feel ill no signs of fever etc. so i went to get my first sputum samples. NTM MAC was found. I started the big 3 antibiotics about 10 days ago (3x a week) but still don't feel better.

I wake from my sleep multiple times a night from congestion in the chest and I clear my lung all day everyday. I usually have sweats in my sleep now. I am very tired of all of it.

Has anyone had a similar experience? My pulmonologist has been infected with covid 19 and I have no access to any doctors in New York until this virus settles down.

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 have read lately that this condition can be life threatening. I've read that this can cause heart failure.

1.Should I be concerned about this TBM or not? 2.Can hard coughing cause more damage to my TBM?

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 patches of color or does it just turn all your skin a weird color. I still work part time with the public and volunteer at an animal shelter and I fear I will be confined to indoors. I sure wish I could find some pictures online of what my skin might possibly look like, but so far no luck.

Wondering what advice u got re outdoor pools.

I've also read (University of Texas) that rifabutin might be substituted for rifampin for those who can't tolerate the rifampin. Per Wikipedia, rifampin is the same as rifampicin. Check with your doctor. They are all part of the rifamycin family (confusing). Don't assume doctors know any better as most doctors aren't that familiar with treating MAC because it isn't a common disease. Have the discussion and don't be afraid to ask the question.

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 treatment. These stories may be shared in a variety of ways, including at speaking events, in media interviews, in videos, in advertisements, in print materials or on our website.

If interested in learning more, please email SharingMyTreatmentStory@gcihealth.com.

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 antibiotics clear these up. My problem is I have had bleeds. I never know when. They always stop if I stay calm.

I hate to keep my husband from his dream, but wonder how safe I will be on a plane. We would be flying in stages with 2 day breaks. I only worry if plane pressure will hurt or sqeeze my lungs....I know it seems foolish to question, but my doctor just said to go...You'll be fine.

Thank you

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 history of exacerbations. (1st appointment) Moderate, fev1 71% post, mild air trapping, normal lung volumes.

My last ct in dec, was without contrast. in the comments, infiltrates gone, nodule stable, emphysematous changes, scarring. Absent was the remark on bronchiectasis. I've asked the docs about how my treatment plan addresses the broncheictasis and they've said "There's no bronchiectasis, it's not on this report." I guess it's good if I don't have it. But really, are they basically saying the original radiologist doesn't know what they are talking about?

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.

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, fatigue, and a big weight loss. I am terribly concerned at how the antibiotic treatment will affect him. My questions are... are there alternative treatments that we should seek in addition to the antibiotic drugs? Diet? Supplements? Alternative medicine? TCM? Ayurveda? I am trying to find any info I can on how patients handle the treatment and how to give him the best support going forward. Thank you so much for any suggestions!

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

drug interactions with suppliments

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.

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,

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-MKXjya76zB4aIz6lR2G23uCOTHkvhoC1E4QAvD_BwE

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"

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.)

• 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 remission on an immunosuppressive for about 20 years. Last winter I had a month long bout with bronchitis and possibly pneumonia. My pneumonologist, who works at a large respiratory center in a top hospital, said at that point that I might have MAI but not badly enough to warrant treatment. Coughing and colds continued for a year and here I am again with bad bronchitis and a strong wish not to deal with pneumonia again. Based on Xrays, she now thinks bronchiectasis and prescribed prednisone and levaquin. After checking out the levaquin I called her nurse and asked for something else, no response yet. (It seems to me that the incidence of bad side effects may be low but the seriousness of the side effects brings the drug risk up considerably.) With a long history of IBD, I can see where this is going. I have three questions for this group of people much more experienced than I am: what tests should I be having to determine what exactly is going on, so I can be proactive, and what antibiotic do you take instead of levaquin? And are there any other Cronies in the group? Thanks for being here.

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! :)

Just received message from pulmonologist that they want to start treatment for MAI as it MAY be dominant cause of radiographic findings. Says treatment will not affect ability to later treat chelonae abscessus.......anyone else have this happen?