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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I'm very curious about alternatives to the Big 3, which I've been on for 4 months. I have recently had side effects, which I believe are from the azithromycin and I'm seeing my doctor next week. I am not prepared to just tolerate the side effects because of the benefits of treating the MAC and will be asking for a referral to a MAC specialist in a larger city near us. The Amikacin sounds like an expensive but reasonable alternative (is it used alone or in combination with other drugs?) and it will be one of the things I will research and discuss with my doctor when I see him. Having MAC has already cost us a lot of money in terms of cancelled trips, reverse osmosis system, etc etc and had a huge effect on our quality of life so another cost is something that I can live with if I have to.
Thanks for everyone's contributions to this forum. I have learned here than anywhere else and, although I may have become a nuisance to my doctor, I feel it benefits me in my efforts to get this disease under control.
Replies to "I'm very curious about alternatives to the Big 3, which I've been on for 4 months...."
@kathyhg I may have shared this with you before, but I have never been on the 'Big 3' for treatment of mac. I was put on alternating months of cipro and doxycycline for two yrs in 2013. I would take them for ten days each month. My mac cleared after one year . Then I got pseudomonas in 2016 and the doxycycline was replaced with inhaled tobramycin. that cleared my pseudo after 30 days. I remain on the tobramycin and cipro to this day. I take these on alternating months. After taking the first toby treatment, I was cough free after 28 days and remain good to this day. My regimen will not work for everyone because it will all depend on one's susceptibility test. BTW, I want to remind everyone to keep a hard copy of your susceptibility test and lab results for sputem.
Hiya kathyhg the inhaled Amikacin is used with the big 3 unfortunatly, but for me it was great.
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The inhaled Amikacin is typically used with the Big 3 at the same time. For me the symptoms of the disease were much worse than the side effects of the big 3.