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MAC Big Three Side Effects

MAC & Bronchiectasis | Last Active: Apr 19, 2023 | Replies (165)

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@jj123

In February 2023 my CT scan showed progression of my Mac disease. My Infectious disease doctor wants me to start the big three. I will be 90 next month. Do not know what to do. So afraid of the side effects. Would appreciate any thoughts. Thank you I know if I were younger, I would definitely take meds.

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Replies to "In February 2023 my CT scan showed progression of my Mac disease. My Infectious disease doctor..."

Welcome to Mayo Connect. Our MAC & Bronchiectasis Support Group is large and varied, with people of all ages, at many stages, and with a laundry list of underlying conditions.

Just recently, the age discussion has come up in several discussions.
Here is one from yesterday:
https://connect.mayoclinic.org/discussion/anyone-just-stop-taking-the-big-3-drugs-after-3-months/

You may find it helpful in making your decision. One thing I especially like to mention is the role of various providers in our lives.
Your primary is there to see the "big picture" and can be helpful in making complex decisions.
Specialists are just that - each looks at one aspect of your care, applies their knowledge and expertise and makes recommendations. Only a few look at the overall picture and make recommendations based on quality of life.
In particular, Infectious Disease Specialists are there to knock out infections using their best tools. Yes, they are aware of possible complications and side effects, but I daresay few are accustomed to treating long-standing infections in what my primary calls "super seniors" - those over 80 still active and managing their own care. And there aren't any studies I am aware of regarding MAC and NTM to guide them.

Here is an active discussion about the side effects of the medications and how people manage:
https://connect.mayoclinic.org/discussion/mac-big-three-side-effects/

So I leave you with 4 questions:
Are you doing routine airway clearance to keep your lungs as healthy as possible without medication?
Are you facing fading quality of life from the lung infection?
Do you have other serious health conditions that should be considered?
Finally, do you have a primary care provider who can help you make this decision? If not, do you have a patient and knowledgeable friend or family member who you can talk through this with?

We're all here to listen and help - come back and chat as you think about this. It is a tough decision.
Sue