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Posts (28)

Tue, Sep 3 5:54pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@sounder27 The Pall Corporation has one medical shower filter that Dr. Falkingham, microbiologist at Virginia Tech has found to not allow the NTM through. I just ordered it today. It is about $50 per month to maintain and and initial $100 to start with attachments.

Tue, Sep 3 5:49pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@beatitnow No I will stop treatment in November. I take Arikayce with Ethambutol and Azithromycin- all 3 times per week. In two months after starting Arikayce I showed significant improvement. That was my March chest CT. Then I had a right middle lobectomy in April. My June CT showed new infiltrates. So they think I keep reinfecting myself. That is why I’m going to great lengths to eliminate NTM in my personal environment.

Tue, Sep 3 8:39am · Starting Arikayce - nervous in MAC & Bronchiectasis

@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness depends on underlying conditions and if you keep being reinfected. I went to National Jewish in CO in July. I found out I am a carrier for the genetic disorder Alpha 1 Antitrypsen. This causes your bronchial cilia to essentially be paralyzed, which makes it difficult to clear infections. I am anticipating having this until I die. I’m only 47, so doing daily airway clearance and boiling my drinking water and ordering a special shower filter, the only one proven to eliminate MAC. Happy to answer any questions you have!

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.