MAC Diagnosis and Medication side effects

I went from MAC w/cavitation for 3 years w/big 3 + Amikacin iv. Cavitation stayed the same. Now treated for aspergillus for the last 2 years with voriconazole. Debris/fungal ball has formed in the cavity.

The damage MAC can do is far more worse than the side effects of the medication in my experience and opinion. I had a 10 cm cavity form within 30 days in my upper left lung lobe while waiting to start treatment. Once certain damage is done, it harder to reverse.

Your sharing about your condition is helpful as it's starting to turn my thoughts towards treatment.

The information you share is pointing towards treatment. Get well. Thank you.

Did you take the Big 3 for 3 years plus the IV? Did it clear up the MAC with the exception of the cavitation?
How is your aspergillus? Is it getting better? I couldn't tolerate the voriconazone (hallucinated) so am on Cresemba but just started and so far so good! Fingers crossed.

how are you feeling and how long have you been on the Big 3? Just wondering because I will be starting them soon.

I started Jan. 29, 2024. I have some itching on upper body and arms.
I wake up at 2 a.m. and can't get back to sleep for two or three hours.
Go to bed and 10p.m. and toss and turn for an hour. Every week or two,
have diarrhea for a day. Tired all the time. No nausea and no appetite.
Lost about three pounds so far. Hard to say which are related to meds.
Have an appt with ID first week of April.
Will discuss w/ him.
Harry

28 months of the big3 + Amikacin iv for 12 weeks. Mac culture was negative by month 5 but ct scan still showed infection (Arikayce added for 5 months). A 6 month break then symptoms set back in so big3 restarted but all Mac testing was negative (even brochosopy) but aspergillus detected. Been on vfend for 15 months and counting. Cresemba would cost me $1000 per month ($6000 per month list price)

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.

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