MAC infection treatment

Posted by sharondig @sharondig, Oct 9 4:24pm

hello everyone, I just joined this site to gather info and share my journey with others. I have just started treatment MAC. I will be taking the big three as some of you call it and will be documenting my progress. My question is, can anyone share their experience with these medications and the actual treatment? It’s a very long process and am hoping to have minimal side effects.
Thanks so much for all of your help!

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mariegrace | @mariegrace | Oct 10 9:13am

Hi Sharon
Many people do well and some cannot tolerate for a year+.
Good luck!
Marie

sharondig | @sharondig | Oct 10 9:19am

In reply to @mariegrace "Hi Sharon Many people do well and some cannot tolerate for a year+. Good luck! Marie" + (show)

Thank you so much Marie!

Sue, Volunteer Mentor | @sueinmn | Oct 10 11:30am

In reply to @sharondig "Thank you so much Marie!" + (show)

Sharon, the best thing you can do is to read here about how people manage while on the antibiotics, keep a positive attitude, and give yourself permission to slow down and rest if you have fatigue.
Many people successfully manage on the antibiotics, dealing with side effects is part of the process, but is can be done.
Have your doctors also had you start airway clearance to help expel the mucus from your lungs?
Sue

sharondig | @sharondig | Oct 10 12:21pm

In reply to @sueinmn "Sharon, the best thing you can do is to read here about how people manage while..." + (show)

Hello Sue
Thank you for responding.
yes i have read most of the posts here and looks very promising.
I am only on one antibiotic but soon will be on the remaining two. I am a bit nervous about side effects but am staying positive as i know i can finally get rid of this thing! No, they have not. Is there something i can ask in particular?

Sue, Volunteer Mentor | @sueinmn | Oct 10 4:28pm

In reply to @sharondig "Hello Sue Thank you for responding. yes i have read most of the posts here and..." + (show)

Here is some very good information about airway clearance, and why we do it:

If your pulmonologist is unfamiliar with it, perhaps they are not very experienced with treating our rare condition. That's okay, take a look at the video, and we'll answer any questions that arise.
Sue

lindabourassai | @lindabourassai | Oct 11 10:43am

Everyone is different. I cannot tolerate the big 3 or the Aricayce . I went to National Jewish as an out patient for a week and took every test imaginable. Their conclusion was that the only thing I could do is nebulize with 7%. Good luck on your journey.

laborday24 | @laborday24 | Oct 11 7:26pm

In reply to @lindabourassai "Everyone is different. I cannot tolerate the big 3 or the Aricayce . I went to..." + (show)

I am going there November 18. How did you handle all the testing. I took the big 3 for two years resistant to azithromycin. Went off in may starting getting headaches. I think I made a mistake. My Mac has gotten worse. I wish I would have stayed on them or at least stopped the azithromycin but dr did not give me the option 😞

lilianna | @lilianna | Oct 12 8:53am

In reply to @laborday24 "I am going there November 18. How did you handle all the testing. I took the..." + (show)

You will be busy but they accommodate well- room, sandwiches and you can rest between the appointments and tests. Your first day will be long but the tests are on time and you can plan to relax too. I have problems with altitude there so prepare to slow down, really slow down. I have a question though- how did you know you became resistant to azythromycin? Were your sputum tests for MAC positive even after two years? Thank you

laborday24 | @laborday24 | Oct 12 11:19am

In reply to @lilianna "You will be busy but they accommodate well- room, sandwiches and you can rest between the..." + (show)

Yes my sputum was positive after two years. I guess it showed the azithromycin was not doing the job

irene5 Irene Estes | @irene5 | Oct 12 11:22am

In reply to @laborday24 "I am going there November 18. How did you handle all the testing. I took the..." + (show)

Clarithromycin is an alternative to azithromycin. Sorry you are having headaches. That’s just awful. Irene5

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