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Fri, Jul 12 8:04am · Starting Arikayce - nervous in MAC & Bronchiectasis

Pretty sure the Arikayse comes from a specialty pharmacy and isn't carried by Walgreen's etc.

Fri, Jul 12 7:49am · Starting Arikayce - nervous in MAC & Bronchiectasis

I started on the inhaled Amikacin/Arikayse in Feb. I had some voice changes that corrected themselves within a couple weeks. I did cough a lot during treatment but that subsided too. No coughing up blood or any of the other scary stuff. Doing the Arikayse treatment after nebulizing any Albuterol and Saline is what helped me stop coughing so much because everything was all opened up and easier to tolerate. I also found doing the treatment before bed and gargling with very warm water after treatment helped with the voice issue since your vocal chords are resting through the night and not being used. Good Luck. It's been very successful for many patients.

Mon, Jul 1 9:28am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

The hoarsness lets up after a couple/few weeks. Also it helps to do the treatment before bed immediately after your albuterol treatment. That way your vocal chords are resting and you aren't using them. So far hoarsness isn't a side effect I'd be concerned about with the success this treatment has had. I was hoarse for a couple weeks but now I'm not.

Tue, Jun 25 7:52am · Medication change from clarithromycin to azithromaycin in MAC & Bronchiectasis

I started on the Azithro along with Ethambutol and Rifabutin. I've constantly had "loose" stools and weight loss.
The disease causes the weight loss too as it is a wasting disease. I take 2 Imodiums every morning and it helps the stool issues. I also supplement with Boost high Protein shakes with 360 calories in each drink and also Ensure Clear Juice with 240 calories in each drink. Try and do some light weight resistant training to keep some tone. IT also helps to keep weight on.

Thu, Jun 13 9:07am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Try gargling and rinsing with very warm water immediately after your Arikayce treatment. The medicine is thick and sticky and sticks to your vocal chords. Also, I found doing the treatment at night before bed helps since the vocal chords rest while sleeping.

Mon, Jun 10 8:09am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

The inhaled Amikacin is typically used with the Big 3 at the same time. For me the symptoms of the disease were much worse than the side effects of the big 3.

Fri, Jun 7 8:44am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Do you mean the susceptibility testing? If so, I'm on 6 weeks of waiting for an updated result.

Fri, Jun 7 7:41am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I was diagnosed in January 2018. Still to this day – no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.