1. < MAC & Bronchiectasis

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!

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

Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 13 1:05pm
In reply to @prancer1996 "Hello I have MAC. I am told that 3 antibiotics are required as treatment. Before starting..." + (show)
@prancer1996

Hello
I have MAC. I am told that 3 antibiotics are required as treatment. Before starting treatment I have been reading side effects and noted that vision and hearing could be impacted. Has anyone currently on the Big 3 had these side effects and if so what are they and what changes were made to help.
Hope to hear from you.
Prancer1996

Jump to this post

Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. Many of us have been on the antibiotics with little to no impact on our vision or hearing. My pulmonologist had me get baseline vision and hearing tests done as I started the meds, then every 6 months thereafter. I did experience some increase in existing tinnitus, but no loss of hearing or vision.
If you begin to have vision issues, the medication Ethambutol will be stopped. According to my ophthalmologist, this happens in less than 10% of cases.
If you have hearing issues, the other two medications may be replaced. I am not familiar with the statistics on how often either occurs.

REPLY
2 replies
laborday24 | @laborday24 | Oct 13 1:59pm
In reply to @lindabourassai "No I cannot take any of the drugs as I am allergic to one or more..." + (show)
@lindabourassai

No I cannot take any of the drugs as I am allergic to one or more of them. I went to National Jewish and had all of those tests to find an alternative. There is nothing I can do except for physical alternatives such as nebulizing, flutter valve etc. If I get ill with something that requires an antibiotic I am supposed to take Clarithrymycin.

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Do you have compression vest. I went off it for a couple days because I have muscle strain and hurts like heck. I don’t think getting beat up will help it. I nebulizer two times a day with albuteral and 6% saline. The flutter doesn’t do well for me

REPLY
laborday24 | @laborday24 | Oct 13 2:00pm

How do you feel. Do you cough a lot

REPLY
prancer1996 | @prancer1996 | Oct 13 2:09pm
In reply to @sueinmn "Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. Many of us have..." + (show)
@sueinmn

Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. Many of us have been on the antibiotics with little to no impact on our vision or hearing. My pulmonologist had me get baseline vision and hearing tests done as I started the meds, then every 6 months thereafter. I did experience some increase in existing tinnitus, but no loss of hearing or vision.
If you begin to have vision issues, the medication Ethambutol will be stopped. According to my ophthalmologist, this happens in less than 10% of cases.
If you have hearing issues, the other two medications may be replaced. I am not familiar with the statistics on how often either occurs.

Jump to this post

Hello sueinmn...
Your response is so appreciated! I am in the beginning stages of decision making .. and very concerned of the length of treatment and the severity of side effects.
I have a lot of reading to do ...
Thank you 🙂
Prancer1996

REPLY
chilest0217 | @chilest0217 | Oct 13 7:41pm

I took the 3(rifampin, azithromycin & ethambutol) for 12 months. I still have MAC and Pseudomonas. I am currently in Tobramycin and Cayston (28 day alternate cycles). Hope these drugs will eradicate the bacteria

REPLY
1 reply
chilest0217 | @chilest0217 | Oct 13 7:41pm

No side effects from any of the drugs yet

REPLY
sharondig | @sharondig | Oct 13 7:50pm
In reply to @chilest0217 "I took the 3(rifampin, azithromycin & ethambutol) for 12 months. I still have MAC and Pseudomonas...." + (show)
@chilest0217

I took the 3(rifampin, azithromycin & ethambutol) for 12 months. I still have MAC and Pseudomonas. I am currently in Tobramycin and Cayston (28 day alternate cycles). Hope these drugs will eradicate the bacteria

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oh no i’m sorry to hear that! did it get better at least for you? i am currently just starting the treatments with the big 3

REPLY
cattleya | @cattleya | Oct 14 10:36am
In reply to @sueinmn "Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. Many of us have..." + (show)
@sueinmn

Welcome to Mayo Connect, and to our MAC & Bronchiectasis support group. Many of us have been on the antibiotics with little to no impact on our vision or hearing. My pulmonologist had me get baseline vision and hearing tests done as I started the meds, then every 6 months thereafter. I did experience some increase in existing tinnitus, but no loss of hearing or vision.
If you begin to have vision issues, the medication Ethambutol will be stopped. According to my ophthalmologist, this happens in less than 10% of cases.
If you have hearing issues, the other two medications may be replaced. I am not familiar with the statistics on how often either occurs.

Jump to this post

Glad to hear people are doing well. Is this treatment for M. Abscessus or for other strains?

REPLY
cattleya | @cattleya | Oct 14 10:38am

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.

REPLY
1 reply
val2652 | @val2652 | Oct 16 1:22am
In reply to @prancer1996 "Hello I have MAC. I am told that 3 antibiotics are required as treatment. Before starting..." + (show)
@prancer1996

Hello
I have MAC. I am told that 3 antibiotics are required as treatment. Before starting treatment I have been reading side effects and noted that vision and hearing could be impacted. Has anyone currently on the Big 3 had these side effects and if so what are they and what changes were made to help.
Hope to hear from you.
Prancer1996

Jump to this post

I have been taking the big 3 for 3 1/2 years, I also went on arikayce in end of March or early April. In August I had a feeling that I may have taken the tablets twice. Dismissed it though as I could not recall having done so no matter how hard I tried. There is a chance that that inkling was correct as my eyesight got worse and I became light sensitive. I saw the ophthalmologist and did the field test it showed there was a loss in quality of sight, and I failed the colour charts tests. This occurred at the same time I got new prescription glasses, to make it all the more confusing. Anyway the sensitivity to light is getting better. My doctor feels there is a possibility that my eyes may repair. I have stopped taking the ethambutol. I will be doing a further field test tomorrow.

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