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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!

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maryjanechilds | @maryjanechilds | Mar 10 6:38am
In reply to @namd "Hi there, I live in London. I was on the b8g 3 for 14 months felt..." + (show)
@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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Ondansetron, 8 mg dissolvable tablets helped my nausea tremendously.

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1 reply
amt005 | @amt005 | Mar 10 7:45am
In reply to @sueinmn "Here is some very good information about airway clearance, and why we do it: https://www.youtube.com/watch?v=VEYK67nld_o If..." + (show)
@sueinmn

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

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Can you please share the link or site you mention in your post? For some reason it’s a blank on my phone.
Thanks
Alana

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1 reply
namd | @namd | Mar 10 9:29am
In reply to @maryjanechilds "Ondansetron, 8 mg dissolvable tablets helped my nausea tremendously." + (show)
@maryjanechilds

Ondansetron, 8 mg dissolvable tablets helped my nausea tremendously.

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Ìnteresting that you took the dissolvable tablet. I had to fight to have the 8mg tablet prescribed but they they were excellent when I finally got to take them. Did you suffer from loss of appetite? I lost so much weight and I do not want that to happen this time. Thank you

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1 reply
maryjanechilds | @maryjanechilds | Mar 10 11:48am
In reply to @namd "Ìnteresting that you took the dissolvable tablet. I had to fight to have the 8mg tablet..." + (show)
@namd

Ìnteresting that you took the dissolvable tablet. I had to fight to have the 8mg tablet prescribed but they they were excellent when I finally got to take them. Did you suffer from loss of appetite? I lost so much weight and I do not want that to happen this time. Thank you

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I did loose quite a bit of weight and struggled with no appetite. My doctor prescribed Mirtazapine tablets, 15 mg. I took on tablet at bedtime and it greatly improved my appetite as well as helped with insomnia.

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1 reply
bayarea58 | @bayarea58 | Mar 10 12:14pm
In reply to @namd "Can inhaled amikacin be taken at home? I am highly sensitive to antibiotics. I am starting..." + (show)
@namd

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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@namd yes inhaled amikacin can be done at home.

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circleup | @circleup | Mar 10 12:33pm

Anyones MAC/MAI spread to other areas of the body?

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namd | @namd | Mar 10 12:51pm
In reply to @maryjanechilds "I did loose quite a bit of weight and struggled with no appetite. My doctor prescribed..." + (show)
@maryjanechilds

I did loose quite a bit of weight and struggled with no appetite. My doctor prescribed Mirtazapine tablets, 15 mg. I took on tablet at bedtime and it greatly improved my appetite as well as helped with insomnia.

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Thank you so much for this useful information. Did you take your antibiotics before bed too?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 10 1:52pm
In reply to @amt005 "Can you please share the link or site you mention in your post? For some reason..." + (show)
@amt005

Can you please share the link or site you mention in your post? For some reason it’s a blank on my phone.
Thanks
Alana

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Try this link:
https://bit.ly/3IsVYws

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 10 2:07pm
In reply to @namd "Can inhaled amikacin be taken at home? I am highly sensitive to antibiotics. I am starting..." + (show)
@namd

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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Yes, Arikayce can be taken at home, but if I had a history of antibiotic sensitivity, I would discuss it in detail with my pulmonologist. I would also ask for a consult with an infectious disease specialist before starting the medications.

My pulmonologist also starred each antibiotic separately, 2 weeks apart so that any reactions could be tracked.

Finally, there is some thought that Rifampin may not be vital to the program, especially when Arikayce (inhaled Amikacin) is being used.

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1 reply
maryjanechilds | @maryjanechilds | Mar 10 3:01pm
In reply to @namd "Thank you so much for this useful information. Did you take your antibiotics before bed too?" + (show)
@namd

Thank you so much for this useful information. Did you take your antibiotics before bed too?

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I was told to take azithromycin after a meal to reduce side effects and to take rifampin and ethambutol on an empty stomach. The schedule that worked best for me was to take the azithromycin after breakfast and the rifampin/ ethambutol at bedtime. We eat an early dinner so that when I go to bed at 10:00 I have not eaten in 3+ hours. I have been on the meds for 22 months, 3 days a week and have been MAC negative since April 2024 so I will be stopping the meds soon.it sounds like you did not take the antibiotics for a full year after you cultured negative. The protocol here is a full year of treatment after you turn negative. I fully expect to have a reoccurrence of MAC in the future. I just hope I get a decent break off the meds before it returns. I will be taking every possible precaution to avoid it. I will say a prayer for your successful and easily tolerated treatment.

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