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Posts (24)

Thu, Jul 18 10:35pm · Starting Arikayce - nervous in MAC & Bronchiectasis

It progressed within the first week. Hopefully yours stays fine!

Thu, Jul 18 8:56am · Starting Arikayce - nervous in MAC & Bronchiectasis

@rits I have been on Arikayce since January. My only issue has been loss of voice. I am at NJH right now and Dr Huitt is having me take 2 albuterol puffs, then Aerobika, then Arikayce first thing in the morning.

Mon, Jun 10 7:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I expressed concern of cost when the drug company called me. They arranged for the copay card.

Sat, Jun 8 8:24am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.

Wed, May 22 12:21pm · Good MAC Doctor Recommendations in MAC & Bronchiectasis

@windwalker Thank you! I did see this doctor on the NTM site. I am seeing a Pulmonologist familiar with MAC, but looking for a 2nd opinion on length of treatment. So I was thinking ID doc would be a good second opinion. I will check into this doctor. I’m just surprised there aren’t any listed in Milwaukee.

Tue, May 21 1:38pm · Good MAC Doctor Recommendations in MAC & Bronchiectasis

I am looking for a good MAC doctor in Milwaukee, WI. Thank you!

Thu, May 9 7:39am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sounder27
I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced on chest CT. I had a lobectomy 4 weeks ago to get rid of the majority of the disease and damage from it. I have only had loss of voice as a side effect.