What is the average life expectancy of untreated mac?

When we think of treatment, we think of medications/pharmaceuticals but I like to think that nebulizing with saline, along with the airway clearance (huff coughs, chest percussion, etc) is also treatment. I am hopeful that this treatment keeps me well for a long time - at least until there is a medication specifically for mac (they are in development).

I agree. I’m not going to take the antibiotics. Many other safer ways. I hadn’t heard about a new Mac medication. That’s good!
Be well.
Carol W.

I am 76 years old and it took 3 years and a loss of 100 lbs before they diagnosed me with mac and Bronchiectasis. I started the big 3 last Aug and last month was taken off ethambutol by my eye specialist after failing my second eye field test. My immune Dr did concur with taking me off the med. But I did get good news that my second series of cultures have come back negative. This is after cultures coming back in the beginning positive for 3 different varieties of mac. Like they say everyone is different, but I think the meds did their job, but I have to admit I was very reluctant in taking them at first and had several side effects. Good luck in whatever decision you decide on.

Thank you

Like you I have sought the answer to this question for the past almost 13 years. No doctor would ever give me an answer. I was diagnosed in 2010, failed the Big 3 twice, and up until last June remained fairly stable with the NTM waxing and waning. Last June I was advised by my NJH doctor that I needed to have robotic surgery to remove a portion of my upper left lobe, and that I needed to try the antibiotics again. When I returned to my hometown, I sought out a local pulmonologist and an Infectious Disease doctor in order to begin the drugs and prepare for returning to Denver for the surgery. Both doctors said that I wouldn't be able to take the drugs and that surgery wasn't needed. The ID doctor said that I should go and enjoy whatever life I had left. I was a jumble of emotions, both grateful and crying a million tears - then got on with it.
I'm a 70 year old woman who has had other major surgery (sub-total colectomy) and is in stage 3 kidney disease. I am 5'6 and weigh 115 lbs. I'm active, still walking 2-3 miles every day, playing with my dog, and up until the pandemic, continuing to work in our family business.
I just saw my local pulmonologist yesterday. He showed me the CT which shows a cavitary nodule that has doubled in size since last August. He said the drugs are a must but since we already know I'm allergic to azithromycin I need to see the ID doctor to find a substitute. First though, I must have a hearing test, vision test, and blood work done. I'll jump through whatever hoops I must while I wait for an appt with my NJH doctor...and try to continue living each day. It's been almost 13 years of a pretty darn good life in spite of NTM. Hang in there - I know I'm trying to.

Thank you for your thoughtful reply. God bless you in your journey. Carol W.

I have taken steroids in the past for ulcerative colitis. They caused osteopenia and gave me cataracts. Thank goodness I am off them now and, with now eith my relatively new diagnosis of NTM and bronchiectasis, I will reframe from them if suggested. They are good for short term things. But, not a good idea for long term use.

Can you please tell me what type of steam inhalation you do?

Hello BusyBeans, My Mayo doc said that the Big 3 can’t reach the infection in the cavity because there is virtually no blood supply enough to carry the drugs there. He ordered a VAT procedure to wedge out that part of my lung and when I went for pre-op the cavity had collapsed. The surgery was cancelled. I can’t take the drugs either anymore.
Stay busy and happy and so much good luck to you!

Thank you so much for this information! I do not trust my local pulmonologist - especially since he is closing his practice and wouldn't give me a referral to anyone. I am awaiting an appt at NJH (where I've been going since 2010). Your information confirmed what I thought I already knew...that the drugs could not penetrate the cavity.

I’m really sorry to learn about your ordeals. My heart goes out to you.

My pulmonologist at NJH told me that MAC does not reduce life expectancy but certainly reduces quality of life.

Amikacin Liposome inhalation suspension is the only medicine, I was told, designed specifically for MAC. There are other treatments in the pipeline. But, it may be several years before they are used clinically. There is an ongoing clinical trial for Amikacin. Of course, your NTM specialist has to recommend you to join this study. Patients participating in this study don’t pay for the very expensive Amikacin, but are responsible for any other drugs in the study.

I read a few weeks ago in this forum someone describing the treatment with inhaled Amikacin. You may want to do a search to find it to read the details. Unfortunately, no drug comes without side effects. If not in this forum, it would be in NTMir. ( https://connect.ntminfo.org/home )
If you are not a subscriber to this website, please do. It is very important to learn from others’ experience. There are also YouTube NTMir videos that you could watch.

In my opinion and from experience as a MAC and Bronchiectasis patient, every patient with NTM should find a “Center Of Excellence” with a large NTM department, nearest to them or travel to one. It is worth it. I traveled to NJH in Denver, Colorado, and put all my trust in the expertise of those specialists. I waisted time with several doctors in my city. CT scans showed progression of the infection without much change in my symptoms. Therefore, once I discovered NJH as a leading institution in respiratory diseases, I took the first appointment and flew 4 hours to get there. The week I spent there was worth every penny and every hour. I still send sputum specimens and consult with my doctor even though, locally, another doctor is managing my treatment. I make trips every 6-12 months for some tests, CT scan and a visit with my doctor.

Please, don’t give up. There are treatments for conditions like yours. You just need to find the right MAC specialists. They will find the right regiment for you even if it takes a combination of routes (IV, oral or inhalation) to be administered.

Best of luck to all.