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Posts (12)

Jan 4, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I was but only kept mac under control. Asoon as I stoppedac galloped ahead. Have now had 11 weeks IV Amakacin therapy & am back on big 3….how long for I dont know…Bidgee.

Dec 27, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi…I am just butting in here – but have been on the big 3, plus IV Amakacin for 11 weeks until it started to affect my hearing. Bidgee

Dec 16, 2017 · Bronchiectasis and rib cage pain in MAC & Bronchiectasis

I dont know if it is typical but i have had rib pain which has ceased since the big 3 plus IV Amakacin…mlbidgee

May 28, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have been on 3 big meds for 12mths with no radiology improvement..anyone else experienced this?

May 20, 2017 · Question regarding lung surgery in MAC & Bronchiectasis

I too have been taking the meds for a year – however latest CXR showed no improvement, although no new lesions! Does this happen with a lot of people? My specialist is now sending me to a TB Specialist, although he said I don’t have TB??? I am beginning to wonder if he knows what he is doing?

Tks for your info Bidgee

Mar 25, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Good luck Katherine with you husband – hope he recovers quickly…. Josephene xo

Jan 26, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@katemn
Hi Kate
I have been diagnosed with MAC Avium Intracell……. plus underlying sarcoidosis and have been on meds (Clarithromycin, Rifadin & Ethambutol) for almost 8 months. During the last month, I have been experiencing extreme fatigue – do many of our other sufferers find this, and what can they do to manage the problem. I feel that I would like to stop medication as the cure is worse than the disease.
Cheers
Josephene.

Jan 7, 2017 · Insomnia. Nothing seems to help. in Sleep Health

Hi Terry, I am a poor sleeper & found it was much worse when I took Rifamcin at night so swapped to the morning & sleep has improved. Good luck. JO