What is the average life expectancy of untreated mac?

Steroid inhalers are localized to the lungs only, as long as you "rinse and spit" after use. I would compare it to putting steroid cream on a rash. It's not absorbed into your bloodstream. Also, the dose is VERY small compared to what one would take orally. I hope this helps you. God bless.

Jan Marie,
My doctor said that the Symbicort inhaler only stays in the lungs. It’s been very helpful. You might want to consider giving it a try.
Carol

I can weigh in a little here - I am at HIGH risk for osteoporosis due to family history and steroid (oral & injected as well as inhaled) use for arthritis and asthma flares. I have followed the best practices for diet, exercise and supplements for over 40 years, and am over 70. My DEXA scans over the past 20 years have stayed almost identical (except hips which are metal now) - no osteoporosis or osteopenia.

I used an inhaler twice daily with an inhaled corticosteroid (ICS), and a nebulized steroid during asthma flares. When assured by my pulmonologist that it was safe, I discussed it with my excellent primary of over 20 years, who assured me that if I followed protocols, the uptake of steroid beyond the lungs is minimal. She also had a very good point.

"If your breathing is impaired to the point where you are not able to exercise, sleep well, and prepare healthy food, not treating with the ICS also increases your risk of osteoporosis. And impairs your overall quality of life."

Pretty convincing to me. We'll see when I have my next DEXA this summer.
Sue

I don't think you are overreacting. It is a very serious and cautious decision to use steroids for me too.
I have a friend's friend, who also had lots of broken bones due to steroids usage, but she took Prednisone not an inhaler since that is the only thing that works for her. We truly hope that makes a difference.
Take care!
Ling

Hello, I am certain every body reacts differently to every disease it is presented with. The way we care for our bodies is important in the food we eat, the way we move our muscles, the rest we get. Everything is connected in our bodies and relies symbiotically on the other. I stopped the big 3 because it made my life worse. Although the drugs were affecting my hearing, my doctor thought I should continue with them even though 3 years later nothing had changed and I was still infected. I will try to be vigilant as time goes on and do what I feel is best for my body. Will MAC kill me? Who knows? It may cause other problems but I am a firm believer in Quality over Quantity. I wish you all the very best!

I'm pretty new to all this, and know nothing about the steriods and bone loss, but I did see a video in which Dr. Kevin Winthrop, ID who has done lots of studies on NTM, said he tries to get patients off steroids if possible. I think because it suppresses immune function.
This study is interesting in this regard (I only read intro and conclusion):
The risk of mycobacterial infections associated with inhaled corticosteroid use
https://erj.ersjournals.com/content/50/3/1700037
Anna

Thank you for that link, it was very interesting and informative. I do lots of research and will add this to my list.

I have not taken any meds since my initial diagnosis in 2015. I personally feel doctors over prescribe antibiotics, prednisone and inhalers.

I prefer a more natural approach. I use steam inhalation when cough gets to bad, take probiotic supplements to better my gut flora (increases natural immunity) and drink lots of water. Plus I eat a plant diet with lots of fruits, vegetables and whole grains. Limit sugar, processed foods and absolutely no fast food.

Hi @janmarie1012,

Since you did not use antibiotics and inhaler, and doing what you are doing, have you had any lung infections in the past 7-8 years since you were diagnosed?

Thanks!
Ling

I had a flair up Nov. '21 and that was when the Bronchiectasis was diagnosed. I was under a lot of stress and coughing up some blood. Antibiotics and prednisone were prescribed, but I did not fill and take.

I have an electric water kettle (steam) that I use along with the breathing volumizer. And, for the most part I can loosen some of the mucus and get it cleared. I know this is not for everyone, but it works for me right now. Not sure what the future will bring.

Thanks. It appears to be working for you.
best of luck!

Ling