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MAC Big Three Side Effects
A few months ago I was diagnosed with Primary Immunodeficiency. My body has stopped producing immunoglobulin G. Next week I'll begin infusion therapy to replace it in my body and repair my immune system. About two months later, I learned I have MAC and bronchiectasis. About a month after I start my infusions I'll begin my antibiotics for MAC.
I'm interested in knowing about others' side effects from the big three. I'm also interested in how you manage your side effects. I know this information will really put my mind at ease. Thank you in advance.
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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.
Where in the Tampa area do you meet. I look forward to all positive VIBES coming my way!
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
Sue, thank you for your insightful reply. I do have a primary care physician, and I will ask his advice. My son, who is the only person around me who can give advice, wants me to go the natural way using ginger and turmeric for inflammation. Also use nebulizer. I am thankful and fortunate that I do not have other health issues. I do not go out, but I’m very content to work at home and around the yard when I can. Again, much appreciation for your response and for this site.
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1 ReactionWe meet via zoom. I will email you info.
Dee