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Does anyone take Azithromycin and Ethambutol every day?
After being diagnosed with MAC in December 2022, I have been seeing Dr. Winthrop, ID doctor at OHSU. I was on the clofazamine trial, got the placebo, but only one sputum sample since then has indicated MAC, and my CTs were relatively stable, so in spite of the coughing which gets better and worse, I thought I was doing okay with airway clearance. But this visit he’s not happy with the pattern of the CT scans, no big decline, but over the three years it’s showing more and more tree in bud. So now he wants me to start just the 2 drugs, but daily. I’ve never heard of that. I thought it was either 3 day or 5 day.
By the way, he did say that the clofazamine study which is to be released soon does show that it does have positive results. Whether that means it’s good enough to use on its own or not, I did not have the opportunity to ask, but I will.
Thanks to all who share your experiences.
Anna
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@sueinmn
I don’t know what daily airway clearance actually means. So I guess I’m not doing it. Can you tell what it means?
Also, I don’t know what nebulized 7% saline is either.
I’ve only ever done the 3
Antibiotics 3x a week until a couple of weeks ago when I was out on the Arikayce protocol.
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1 Reaction@sonofrio It seems you are dealing withan ID doc who is not familiar with thecurrent protocols for treating MAC.
This is not uncommon, as MAC is a rare infection and many docs rarely see it.
May I suggest that you find a pulmonologist who manages MAC and Bronchiectasis regularly as part of their practice?
In the meantime, here is a place where you can go to learn the basics of managing this infection:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
Basically, airway clearance is a method of intentionally clearing the mucus in your lungs, and can be accomplished many different ways. Here is a YouTube Video by Dr Pamela McShane, one of the experts in the field:
7%saline solution in a nebulizer, used before airway clearance, helps thin the mucus so you can cough it up more easily.
Do you currently see a pulmonologist?
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2 ReactionsI have bronchiectasis and have been on amikacin nebulized 2x a day for almost 2 years and recently put on azithromycin daily since October this year. No infections since October; feel wonderful at this moment. Prior to azithromycin, I seemed to have been on a roller coaster of infections of PSA and fungal/yeast; a month on IV meds ; 2 weeks no infection; then infection again and back on IV. This was this past 3 years. I am awaiting the arrival of brinsupri from the pharmacyand hoping the combo of antibiotics and brinsupri work well.
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1 Reaction@sueinmn
Sue, thank you for sharing Dr. McShane’s video. While unlearned a lot, I don’t have the mucus build up that she is speaking about. I hardly ever cough, except in the morning. I am seeing who I was told was the MAC specialist in the Philly area but he may not have recommended these treatments based on my low level of MAC. It was found during a calcium score CT. That said it did advance this fall and I think I need to get a second look at my situation. I’ve been interested in calling Mayo for an executive physical, does Mayo have a MAC specialist? Do you have a specific number I should call or should I just google Mayo and call the main number? Thanks again for being to thoughtful and sharing this information.
@sonofrio Yes, Mayo has MAC specialists at all of their locations.
Here is how to initiate contact:
https://mayocl.in/1mtmR63
Good luck finding a solution that will get you off antibiotics!
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1 ReactionI have been on Azithromycin and Ethambutol for 3 years now. Relatively mild MAC with persistent tree in bud on annual CTs with no improvement. Have also been on Arikayce for 2 years now. My pulm doc had me on Clofazimine as a 4th drug, but I had to drop it after several weeks as the fatigue was severe.
Am waiting for Cigna to approve out of network visit to NJH.
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1 Reaction@drewinsac I used that for 6 months on top of the big 3. Caused some moderate hearing loss. Felt like it was helping. But now on the big 3 plus clofazimine. Lots of pills.
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1 Reaction@lynncat Cough gone sounds like heaven! I’m glad it’s working for you. Thank for sharing your experience.
@sueinmn
Hi Sue,
Could provide a telephone number for me to call into Mayo in Minneapolis to schedule an appointment? I completed the online form the day you sent me the link in your reply above but I haven’t heard from anyone. Thank you.