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15 hours ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker I have an appointment with the ID doctor on 6/26, I will keep you posted. I am on my 6th week of Amikacin inhalation. I think the hoarseness is a little better. I am doing albuterol inhalation before the Amikacin and I gargle with warm water and also drink warm water after every treatment. Still hoarse but not as bad as the previous weeks.

4 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello @heathert Did you have any side effects? I started Amikacin inhalation and the big 3 in April. One week after I started the Arikayce, I began having hoarseness which wasn’t going away. I saw my pulmonologist after week 2 and he put the Arikayce on hold for one week. He told me to do the albuterol inhalation before I do the Arikayce inhalation when I resume the treatment. I am on my 5th week of Arikayce and my voice is again croaky. I called my pulmonologist to inquire if it’s ok to switch to every other day instead of the daily treatment. I am waiting for him to return my call. I am wondering if switching it to every other day will still be effective.

Wed, Apr 24 7:22pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@angiejohnson Thank you for the reply. I started the big 3 (daily) in March and today I started the Arikayce inhalation. I will keep you all informed if there will be side effects and if there will be medication adjustments.

Fri, Apr 19 9:56pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@angiejohnson My Pulmonologist and myID doctors are suggesting lobectomy also. This is my second MAC infection and bronchiectasis is getting worse. How long did you stay in the hospital? Did they place a chest tube after surgery? I am scared to have the surgery, but I think It makes sense to get it done. If brochiectasis is getting worse, it might affect my entire right lung if I keep getting infections. Don’t know what to do. I always pray that God will lead me to the right decision.

Tue, Mar 12 8:02pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@spencersok Thank you for the prayers. My pulmonologist suggested surgery (lobectomy) if medical management will not treat the Infection.

Tue, Mar 12 7:03pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker @heathert @supermom890 here’s an update from jasmine321. My CT scan looks worse; initial scan in 2012 only right middle lobe was affected. CT scan in January 2019, bronchiectasis spread to small part of lower lobe. Underwent bronchoscopy in February. Copious mucoid yellow secretions were found in the right mainstream bronchus, in the right middle lobe and in the superior segment of the right lower lobe. My Pulmonologist partnered with an ID doctor. ID prescribed Ethambutol, Rifampin and Azithromycin daily plus Arikase inhalation. I read the packet sent to me about the Arikase inhalation and found out vertigo and tinnitus are common side effects. I already have vertigo that’s why I don’t drive far. My husband drives me to work at times. I also have ringing in my ears. Therefore I told the ID doctor that I will do the 3 antibiotics for 6 months, and if no improvement, we will add the Arikase inhalation. I work full time so I cannot afford to call in sick all the time because of the side effects of the medications. My first treatment was MWF for the 3 antibiotics. Now, my ID doctor prescribed the big 3 daily. Wondering if daily is too much. Today is my fifth day of taking the big3. So far, no problems. Taking probiotics with prebiotics.