Ending MAC treatment

Posted by deestrada @deestrada, 2 days ago

This is my 2nd MAC experience first took big 3 for 16 months. Returned in 2024, been taking 2 drugs for 22 months and an anakacin pickine for 3 month. Have a 3 cm cavatation. At first my dr said I could stop antibiotics within the next t month. I’ve had 3 negative spun tests this year. Now she says I should keep taking drugs so my cavitation won’t start growing again and I’ll need treatment all over again. Any comments?

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blm1007blm1007 | @blm1007blm1007 | 1 day ago

I don't know enough to help you overall...but...you may know what is best for yourself. Have you asked the doctor and discussed with the doctor, fully, all the possible consequences of continuing and not continuing. Also I would think your decision always depends upon how you feel and if you are easily short of breath.
I prefer to go with my gut decision because I know my body...I have lived with it for 83 years. Granted it is true that things change...but do you feel you know what is best for you in the big picture?
Barbara

deestrada | @deestrada | 1 day ago

Thanks Barbara, something to contemplate.

Sue, Volunteer Mentor | @sueinmn | 1 day ago

In reply to @deestrada "Thanks Barbara, something to contemplate." + (show)

@deestrada Here are a few questions raised by your post -
Are you seeing a pulmonologist who has experience with "refractive" MAC infections? Those are infections that seem to be gone, and then come back.
When you say that you have had 3 negative sputum tests, what was the period of time? The "gold standard" is to continue treatment for 12 months after the last positive culture.
Finally, has the cavity diminished in size at all during treatment?

Are you being treated by a pulmonologist who specializes in Bronchiectasis and MAC?

deestrada | @deestrada | 15 hours ago

In reply to @sueinmn "@deestrada Here are a few questions raised by your post - Are you seeing a pulmonologist..." + (show)

@sueinmn I’m not sure if my pulmonologist has experience with refractive MAC. I had my first infection in 2012. Was treated with the Big 3 for 16 months. Apparently came back about 6 years ago but not confirmed or treated, cavitation and MAC confirmed in 2024. The cavitation is 3 cm and has not increased in size. My infectious disease doctor and pulmonologist both specialize in bronchiectasis and MAC treatment, thanks for your questions.

Sue, Volunteer Mentor | @sueinmn | 5 hours ago

In reply to @deestrada "@sueinmn I’m not sure if my pulmonologist has experience with refractive MAC. I had my first..." + (show)

@deestrada based on your posts, if in your situation, I would continue treatment for another 6 months or a year and revisit it with my care team then.