MAC infection treatment

Posted by sharondig @sharondig, Oct 9, 2024

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@cattleya

Hi. i also just started here. Can someone tell me what the big 3 are and if they are for M. Abscessus infection or another strain of Mycobacterium. Thanks.

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Ethambutol, Rifampicin (Rifidin) and Azithromycin.
No idea what else they can be used for but it would not surprise me if it was a multitude of things.

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@val2652

Ethambutol, Rifampicin (Rifidin) and Azithromycin.
No idea what else they can be used for but it would not surprise me if it was a multitude of things.

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Thanks so much!

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@mariegrace

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

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Thank you!

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has anyone done stem cell? if so, where? and of course, did it help.

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@jenis3

has anyone done stem cell? if so, where? and of course, did it help.

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I don't think there is stem cell therapy available for lungs at this time.

Here is what the American Lung Association recently had to say:
https://www.lung.org/lung-health-diseases/wellness/public-health-issues-lung-health/stem-cell-therapy

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Hi there,
I live in London. I was on the b8g 3 for 14 months felt pretty awful but cleared Mac after 6 months. I was on daily treatment I had to stop working. So many side effects and my weight loss was crazy. I am a slim lady anyway but I was less than 8 stone. It has taken me a whole year to put some weight back on. Felt so relieved when I stopped treatment. I ended up having to have treatment for an irritated bladder . I found out this week that my MAC has returned.i have to go on tje big 3 again. I will do it but if I feel as awful as I did the last time I am not sure if I will last the course. I will take my meds in the evening with food and I will take probiotics every morning. My anti nausea was the only thing that stopped me fro. Getting sick. I only want to take the big 3 three times a week as I do not want to have to give up my new part time job. Anyone got any advice about taking these antibiotics. I worry about the serious side effects. I am a 58 year old female who has rarely been ill the wham your life changes utterly

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@namd

Hi there,
I live in London. I was on the b8g 3 for 14 months felt pretty awful but cleared Mac after 6 months. I was on daily treatment I had to stop working. So many side effects and my weight loss was crazy. I am a slim lady anyway but I was less than 8 stone. It has taken me a whole year to put some weight back on. Felt so relieved when I stopped treatment. I ended up having to have treatment for an irritated bladder . I found out this week that my MAC has returned.i have to go on tje big 3 again. I will do it but if I feel as awful as I did the last time I am not sure if I will last the course. I will take my meds in the evening with food and I will take probiotics every morning. My anti nausea was the only thing that stopped me fro. Getting sick. I only want to take the big 3 three times a week as I do not want to have to give up my new part time job. Anyone got any advice about taking these antibiotics. I worry about the serious side effects. I am a 58 year old female who has rarely been ill the wham your life changes utterly

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Ginger tea or peppermint tea or ginger chews might help with nausea. Could also ask your doctor if a two-drug regimen, azithromycin plus ethambutol, is an option. There's an ongoing clinical trial looking two drugs versus three, and some studies in other countries have shown positive results for the two-drug plan, at least for non-cavitary MAC. For cavitary MAC they usually want to be more aggressive. Good luck.

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@wolfplanetzero

Ginger tea or peppermint tea or ginger chews might help with nausea. Could also ask your doctor if a two-drug regimen, azithromycin plus ethambutol, is an option. There's an ongoing clinical trial looking two drugs versus three, and some studies in other countries have shown positive results for the two-drug plan, at least for non-cavitary MAC. For cavitary MAC they usually want to be more aggressive. Good luck.

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Thank you so much. I want to reduce all the side effects I experienced the last time.
I will be asking lots of questions this time!

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@namd

Thank you so much. I want to reduce all the side effects I experienced the last time.
I will be asking lots of questions this time!

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Also, do some asking before restarting the medications. There is some additional risk to taking ethambutol ans rifampin for the second time.

Also, with the recurrence, is it possible to begin right away with inhaled Amikacin?

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Can inhaled amikacin be taken at home? I am highly sensitive to antibiotics. I am starting probiotics in preparation for the big 3. Rifanpicin is the one that concerns me the most. I am doing lots of research. Many thanks

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