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MAC Diagnosis and Medication side effects
MAC & Bronchiectasis | Last Active: May 5 6:11pm | Replies (42)Comment receiving replies
Yes I was diagnosed in August 2021. I have MAI and BE . I don’t seem to be having any symptoms at this time. I do airway clearance twice a day . I have decided not to take the treatment due to things I have read and been told about side effects. I will decline them as long as I can. Hopefully that’s for ever. When talking to my ID Doctor he told me that no matter what the infection will return . Usually it is temporary but will return so if I can avoid the treatment it’s better. At my age of 71 at that time he said he would prefer I didn’t take it due to my age. Don’t get me wrong I know some people need it. I will never say never but I have no other health issues at this time and do not want to risk anything new happening if I can avoid it. I also walk 5 miles every morning when I get up to clear my throat. It helps after sleeping all night with the mucus which is mild. Well that’s my opinion and I will work as hard as I can to keep the medication away.
Replies to "Yes I was diagnosed in August 2021. I have MAI and BE . I don’t seem..."
Karrisy,
I just turned 79 and, like you, I swore I would never go on the antibiotics unless absolutely necessary. I have both BE and MAC. I have two subspecies of the latter, one slow growing and one fast growing. I also have 2 fungi.
Well, after months of testing and 12 major hemoptysis episodes, 10 days ago my ID doctor at NJH has put me on 2 of the 3 antibiotics, Ethambutol and Azrithromycin. I took the Azrith for 1 week and have just added the Etham this past Saturday. I am unable to do any ACTs because they have caused my hemoptysis, including saline, and my only option, for now anyway, is to take the drugs to help with the hemoptysis. The two fungi, since my latest CT last month, show little to no growth and will go untreated until I get my hemoptysis under control.
If you are interested in the reason I am not on Rifampin, you may want to read an August 18, 2023 article "NTM-PD Advances: More PROS, Less Medication Burden, Omics Technology." Dr. Kevin L. Winthrop, MD, MPH, professor at the School of Public Health at Oregon Health and Science University in Portland, compares 2 vs 3 antibiotic therapy for MAC.
I'm hoping you will reconsider your thoughts about the meds. For some people they work and for some, there are side effects. I am thinking positive because I have to -- I have no other choices. Although I am early in my treatment, so far so good. My audiologist and ophthalmologist have been alerted and I am prepared for whatever happens in my future.
Wishing you the best on your journey.
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Wow! 5 miles a day is impressive. You are not the only one who finds moving to be the best method of airway clearance - with occasional (2-3 X week 7% saline) and puffing my Aerobika, I don't need much else. I alternate 45-50 minutes of yoga with walking to get my lungs pushing stuff out.
I did treat for almost 2 years - it was hard - but 4+ years of this method has kept me off meds.
Sue