1. < MAC & Bronchiectasis

MAC nodules

Posted by bibes @bibes, Jul 22, 2019

Hi, everyone. Hope you are having a good day. I thought I knew almost everything about the MAC disease was diagnosed with five years ago.
Six months ago nodules were found in my lungs. I am having another catscan in a few weeks. I haven't seen my pulmonologist since them.
I am 85 and have gotten more and more tired since that last catscan and shorter of breath. 'But still walk 2 miles every day. My questions are this:
Does everyone with MAC get nodules? What are your experiences with this nodule thing? Thank you so much for any information. Elizabeth

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irene5 Irene Estes | @irene5 | Jul 26, 2023
In reply to @frankie160 "Hi Irene5 and other Members! Thanks for your post re Arikayce curing your MAC! I was..." + (show)
@frankie160

Hi Irene5 and other Members!

Thanks for your post re Arikayce curing your MAC! I was so encouraged and certainly hope you never have MAC again.

Just wondering when you started Arikayce and how long after were you negative?

I started Arikayce on 7/10/23 and so far with little to no side effects just the voice changes and some extra coughing! I was told by the special Arikayce Pharmacist these side effects could remain for the duration you are on the med. I am also continuing the Big 3 which I have been on for more than 10 months.

Thank you in advance for responding and should there be any other members of this wonderful group who are on Arikayce or have been cured, I would appreciate a response when you can.....

Thanks,
Flo @frankie160

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I was put on Arikayce in June of 2020 and was on it till February of 2022. I was tested via two bronchoscopies - one in June and another in August of 2022, and both were negative for MAC. I had very few if any side outward side effects from Arikayce. Good luck! Irene5

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dorma | @dorma | Jul 26, 2023

Nodules in my lungs are how they discovered I had MAC. They were looking for something else..

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Rick | @rstel7272 | Jul 27, 2023
In reply to @irene5 "So that is odd to me! I was diagnosed with invasive aspergillosis last summer after a..." + (show)
@irene5

So that is odd to me! I was diagnosed with invasive aspergillosis last summer after a lung procedure. A blood test that picks up aspergillosis is probably not good. I am hoping it was an allergy blood test that showed you are allergic to mold - specifically aspergillosis. Trilogy will not help aspergillosis in your lungs. It may be good for your asthma, but if you have aspergillosis get yourself to an infectious disease doctor asap!!! You will be put on something like Vfend or Cresemba - after it is effectively diagnosed. (@irene5)

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I blame Symbicort for my aspergillosis ..

Steroids diminish the host response against Aspergillus in a variety of ways including inhibiting neutrophils, suppressing type 1 T helper cells, enhancing cytokine release from type 2 T helper cells and inhibiting ROI production [4].Feb 16, 2017
Invasive pulmonary aspergillosis in a steroid-dependent ...
National Institutes of Health (.gov)
https://www.ncbi.nlm.nih.gov › articles › PMC5328747

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1 reply
irene5 Irene Estes | @irene5 | Jul 27, 2023
In reply to @rstel7272 "I blame Symbicort for my aspergillosis .. Steroids diminish the host response against Aspergillus in a..." + (show)
@rstel7272

I blame Symbicort for my aspergillosis ..

Steroids diminish the host response against Aspergillus in a variety of ways including inhibiting neutrophils, suppressing type 1 T helper cells, enhancing cytokine release from type 2 T helper cells and inhibiting ROI production [4].Feb 16, 2017
Invasive pulmonary aspergillosis in a steroid-dependent ...
National Institutes of Health (.gov)
https://www.ncbi.nlm.nih.gov › articles › PMC5328747

Jump to this post

Well that I didn’t know. Thank you for that new information. I use BREO, and I’m guessing they are similar. It is all very “no bueno” for me. My brother had to go into an extended care facility, and his girls brought me many dirty and moldy cardboard boxes of our lives. That’s all I can think of as to where I got it as I painstakingly went through them all and put them neatly in plastic bins. I’m sure I sucked up a lot of dust etc in the process. I am a type A personality and the fatigue with this tries my patience. One day at a time. ( irene5)

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