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Anyone had experience with alternatives to Big 3 drugs for MAC?
MAC & Bronchiectasis | Last Active: Jan 12 9:26am | Replies (19)Comment receiving replies
Welcome to Mayo Connect. PLEASE! do not let the fact that people have side effects from the antibiotics stop you from doing what is medically necessary.
Every person has a different experience with their disease, their infection, their airway clearance, and when needed their antibiotic therapy. In spite of how it sounds here, not everyone has a terrible reaction to the medications, and even when we do, if the infection is severe, it may be necessary to regain out health or avoid loss of lung capacity.
We have addressed this in the past, and you can read about it here:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
Maybe you can tell us a little about how/when you were diagnosed, how you have been managing so far, and whether it is now being recommended that you begin antibiotic therapy?
Sue
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I had a bronchoscopy last year which revealed a fungal infection, Pseudomonus and MAC.
I was successfully treated for the fungal infection for 3 months and it has not come back. I felt so good then that I declined antibiotics treatment for the other 2 infections and instead I took some NAD+ precursors (NMN) and the antimicrobial pterostilbene. and daily Budesonide nebulizing, with approval of my pneumologist and i D doctor. I did extremely well for a year, exercising everyday, pushing harder and harder on cardio. But after choking on a waffle beginning of December, I started to bleed. Which triggered more testing: flare-up of Pseudomonus pneumonia, and the MAC. Was treated for Pseudomonus and my I D doctor started me on Azithromycin and Rifampin. Ethambutol was delayed because I could not get an appointment before end of January with opthtalmo. I took the 2 meds for 10 days and stopped because my blood pressure was constantly elevated and I could not sleep more than 3 hours. No support from my PCP and my I D doctor insists the side effects are minimal for all 3 meds and that the very vast majority of patients have zero issue on them.
So i have been looking for info on the Mayo site. I am also contacting Cleveland clinic. I know reactions to those antibiotics vary from one person to the next but I believe knowledge is power and I think there is always something that can be done to mitigate effects. My pneumologist never talked to me about airway clearance. He congratulated me when I told him I did not bring up sputum and barely coughed.
So I am a little lost right now. I must say that I am feeling worse after stopping the meds than I was feeling before getting on them. I was feeling great before taking them. Now it feels like I have a lot of phlegm.
The regimen that was prescribed to me was: 500 mg Azithromycin, 450 mg Rifampin, Ethambutol, 1200 mg Ethambutol, those 3 every day. I messaged my pneumologist to ask him if he would ok me taking NAC. No reply. I am a tiny person: 108 lbs on a good day since taking those meds for 10 days. Before I was around 110-111 lbs. My O2 level is good.