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Sun, Jun 30 4:02pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.

Sat, Jun 15 9:59pm · (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.

Tue, Jun 11 7:35pm · (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.