Discussions

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?

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 with companion wheezing in my upper airway and SOB.

Thanks, Kerie

Wondering if anyone nebs mucomyst and if you think it helps. I feel it makes me more sob. Dehydration?

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 treatmen?… I’m willing to travel. National Jewish hospital? Stanford? NYU? UCSF? And which doctors?

And which doctors?

Please advise

Thanks so much,

This whole disease is sooo frustrating. Different doctors recommend different things so it is hard to know what to do. I beat MAC after 10 years! I try to be careful but evidently not careful enough, because now I have M. massiliense. Same type of treatment which is a big yuck but what can I do? I will definitely try to be more proactive. I drink only Spring water but do not have any filters on my water supply. I cannot bear the thought of giving up my showers but I may have to. I have not been given much info about the water situation but I will definitely start investigating.

Good luck on your journey. You can do it because you have to! Protecting our lungs must come first.

safe beverages on planes and in rest

I have only been on this drug for 7 days but have noticed after each treatment my oxygen goes down and my heart rate goes up. My physician said at this time he is not concerned. Has anyone else had these side effects this early in treatment?

I was born in 1946. I was diagnosed with chronic bronchitis at age 4 after a few events of bronchitis and two of pneumonia - the first at three months.

At six I was diagnosed with Bronchiectasis and my parents were told I would not make it through my teens without surgery. (The current drugs and other meds didn't exist in 1953.) I had a lobectomy at age 7 to remove the two lower lobes of my right lung, and another at age 12 to remove the lower lobe of my left lung. I still had pneumonia and bronchitis a few times during my teens.

But, though most of my 20's through 50's I was active and able to work and play. I played recreational softball and competitive volleyball. Into my 40's I could still play a bit of basketball. I mention this to illustrate that I was able to do most everything, though I never had stamina for running. I had a lot of colds, a few bouts of bronchitis, and pneumonia twice. I had to be careful about colds and avoid the flu.

I never expected to live into my 50's.

It was around then that I had to more actively manage myself. I have a few exacerbations each year now and have to take antibiotics plus prednisone to get over it. I also use a few other meds and usue oxygen when I sleep or take moderate walks. I see my pulmonologist a few times per year.

I am 72 now and finally running out of air. I am still able to do many things but have more problems more often.

I'm starting to think I may be close to the record for longest life after a very early diagnosis of Bronchiectasis.

A friend told me last week that I was going to live another 20 years! I think she is overly optimistic, but I guess I'll go for it.

Hello I have been recommended Pall med filters for NTM-Xenopi control in home shower and taps. has anyone used these or got advise on which ones are best?

Has anyone tried using Hypervolt instead of a vest to improve chest clearance. i discovered it through a physical therapist for back pain, but the 'banging' movement of the tool reminded my of the chest physical therapy i received a while back. Scheduling chest therapy is time consuming and tough to fit in the day, so i had the crazy idea that this could work to the same effect. Wondering if anyone had tried?

here is a picture https://hyperice.com/hypervolt

Here is a link to a video that shows how it works to use it on the chest side

https://www.youtube.com/watch?v=xIpV6DbJ_Z0

and to use it on the back

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...