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Discontinuing MAC antibiotics

MAC & Bronchiectasis | Last Active: Nov 27, 2023 | Replies (73)

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@pjgottman

Thank you - the one at a time approach was also recommended by someone else. Why wouldn't an Infectious Disease doctor have recommended that after the first go round?! I have both a pulmonologist and an ID doctor, so obviously I am following their instructions. I will continue to explore this site - not getting much information from current medical team. I appreciate you. Thank you.

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Replies to "Thank you - the one at a time approach was also recommended by someone else. Why..."

I agree. Right now I am on the Big 3 with Ariykace. I also take other meds and not once have my MDs expressed how I should take them. Does anyone have any suggestions as I am struggling with SOB, which has gotten worse, weight loss and extreme fatigue. Not sure how much longer I can continue the daily 3 as my body is showing the affects and my poor hubby is not sure if he agrees as I am seriously thinking of discontinuing my meds.. Please any advise on how I should takes the big 3 to make it easier.......

If you have done some reading here, you may have seen reference by others to how hard it can be to get good care for MAC & Bronchiectasis. I don't know about you, but I had never heard of either one before my diagnosis, even though I had been around people with lung issues my whole life. Both are considered "rare" conditions, affecting less than 1% of the population, so doctors may go through their whole career seeing very few cases. My pulmonologist had a pretty long history of treating MAC, but I learned he was NOT a team player, and was not open to questions, new or additional treatments, or cooperating with other doctors. He "fired" me when I consulted an ID doc in his clinic who had opinions different to his!

We on Mayo Connect always like to say you need to become your own best advocate to get the best possible care. If you are not getting much info from your team, you may want to ask what can feel like delicate questions:
How much experience do you personally have treating MAC?
How many cases have you treated in the past year? 5 years?
Have you had specific training/workshops in treating MAC?

Another hint would be if they have started you on a daily airway clearance routine, which is a big part of getting & staying healthy. If they don't deal frequently with MAC and Bronchiectasis, you may want to ask their help in finding someone who does.

Are you comfortable asking questions of your care team? Trust me, you are not a wuss - this is a tough treatment to get through.
Sue