Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Ellen, I’m no Sue when it comes to knowing a ton of stuff about what ails our lungs. But I can tell you this about 7%. I buy it at a pharmacy with a Prescription from my Pulmo, only because I have Medicare Part D which makes it affordable. I’m not absolutely sure, but I think it’s available from Amazon; I’v bought 0.9 from Amazon. I’m not sure if 7% is available there but it’s worth checking.

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I have gotten the 7%...it is on Amazon and maybe also on ebay. Had to buy it on my own as my pulmonologist said he did not want to prescribe it last time I went as he said it can cause bronchospasm. I have had no problem with it and plan to ask him again when have my return appointment. I can get it cheaper with a prescription. Thank goodness found out about it on this forum. I do have a question....when everyone nebulizes twice a day, how long in between do you wait? I used to do morning and evening but at this busy time I sometimes do the second one in the afternoon and feel like getting it in then is better than missing a second all together.

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Ellen, I’m no Sue when it comes to knowing a ton of stuff about what ails our lungs. But I can tell you this about 7%. I buy it at a pharmacy with a Prescription from my Pulmo, only because I have Medicare Part D which makes it affordable. I’m not absolutely sure, but I think it’s available from Amazon; I’v bought 0.9 from Amazon. I’m not sure if 7% is available there but it’s worth checking.

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I always do mine in the afternoon between 3-4. I was told its always better to do before dinner.

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Thank you for your reply, Sue.
Where do you buy the 7% hypertonic saline?
Have you done the nebulizer with the aerobica attached? Do you need the 7% ?
Ellen

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I split mine up. I am also on synthroid so when I wake up, I take it. I wait 2 hours and take my first dose of ethambutol and my only dose of azithomycin. Before I go to bed I take my other dose of ethambutol and rifampin. I have not had gut issues and I've been on for a year. I do have ringing in my ears and it wouldn't matter what time of day I took my drugs for that. I am on 3 times a week too but they are talking about going to daily. If someone has a better regimen I'd like to hear it too. The rifampin was interfering with my synthroid. It seems to be working giving a 2 hour split.

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@cmi Welcome to Mayo Clinic Connect, a place to give and get support. You will notice that I changed your conversation to, "Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC."

I did this so you could connect more quickly with active members of the MAC groups like, @thumperguy @windwalker @heathert @brigby @poodledoc more quickly.

You are looking for ways to better tolerate the medication trio. May I ask what your provider has offered as an alternative to the medication trio?

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@erikas I have been following Mayo NTM for about a year. Just a note, not every good at following sometimes. Recently someone mentioned a few podcasts. I picked up on NTMtalk. It has been very helpful for me to see the big picture. As a moderator, I thought maybe you could mention this to the group. Thank you.

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I am guessing @erikas that most of us have felt “alone” on this journey at one time or another due to there not being knowledge or understanding or needed support among friends or family. There are even physicians who don’t “get it.” How many of us actually knew what MAC/MAI was prior to being diagnosed? This forum provides that emotional support and validity about this disease for so many not to mention the wealth of knowledge we glean here. I think the pandemic adds stress all around. irene5

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I had never heard of MAC and was shocked to learn about the recommended medications! So far I have not taken any of them. At age 83, I hope to just manage the disease.

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