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What is the average life expectancy of untreated mac?

MAC & Bronchiectasis | Last Active: Apr 22, 2023 | Replies (52)
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@janmarie1012

I was diagnosed with MAC in 2015 and then Bronchiectasis last year after ending up in ER coughing up lots of blood.

I have daily coughing spells bringing up about 20-30mil mucus. Bad during humid and high allergy days, which is often since I live on coast of Texas.

I started losing weight after my husband was diagnosed with cancer. He died 3 years ago next month and the following year my son was diagnosed with cancer. I attributed the weight loss to grieving and stress, but now realize it is another symptom. Add to that endless fatigue!

I have an inhaler, but I hesitate to use because of steroids causing bone loss. My mom had osteoporosis and Bronchiectasis and her continual use of steroids really caused her years of pain from broken bones.

Life gives us lots to deal with, but at least this is not life threatening, just annoying. I hope you are able to manage okay.

Keep in touch, Jan

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Replies to "I was diagnosed with MAC in 2015 and then Bronchiectasis last year after ending up in..."
arbakr | @arbakr | Mar 31, 2023

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.

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annagh | @annagh | Mar 31, 2023

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

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@ling | @wangling | Mar 31, 2023

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

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