MAC Diagnosis and Medication side effects

what is vfend? Yes, the Cresemba cost me $1200 for the first 12 days but that includes my co-pay. I will reach the catastrophic level in a couple of months and then it won't cost anything ($8,000 is catastrophic level). Incredible how expensive these medications are.
Is the Amikacin IV to treat a cavity?

Vfend is voriconazole for fungal/aspergillis. My Medicare Part D copay for Cresemba is would be $1000 ($6000 x 20%). I guess mine would cap at $8000 per year.
Yes, Amikacin iv can added to the big3 at the start if cavitation is present or layer if culture is still positive. The expesnive inhaled Arikayce is substituted, but not covered under my part d plan at all.

Karrisy,
I just turned 79 and, like you, I swore I would never go on the antibiotics unless absolutely necessary. I have both BE and MAC. I have two subspecies of the latter, one slow growing and one fast growing. I also have 2 fungi.

Well, after months of testing and 12 major hemoptysis episodes, 10 days ago my ID doctor at NJH has put me on 2 of the 3 antibiotics, Ethambutol and Azrithromycin. I took the Azrith for 1 week and have just added the Etham this past Saturday. I am unable to do any ACTs because they have caused my hemoptysis, including saline, and my only option, for now anyway, is to take the drugs to help with the hemoptysis. The two fungi, since my latest CT last month, show little to no growth and will go untreated until I get my hemoptysis under control.

If you are interested in the reason I am not on Rifampin, you may want to read an August 18, 2023 article "NTM-PD Advances: More PROS, Less Medication Burden, Omics Technology." Dr. Kevin L. Winthrop, MD, MPH, professor at the School of Public Health at Oregon Health and Science University in Portland, compares 2 vs 3 antibiotic therapy for MAC.

I'm hoping you will reconsider your thoughts about the meds. For some people they work and for some, there are side effects. I am thinking positive because I have to -- I have no other choices. Although I am early in my treatment, so far so good. My audiologist and ophthalmologist have been alerted and I am prepared for whatever happens in my future.

Wishing you the best on your journey.

Pmmar1, I just started my first hemoptysis episode in 18 months. On the 3rd day of AZ, see pulminologist tomorrow, maybe he adds ethambutol. I neb'd saline the last 3 days, will stop today. Who is your ID Dr at NJH?
-Rick

I stopped airway clearance and nebulizing saline because it leads to hemoptysis. Nothing scarier than that.

May I ask if you refer to the use of Aerobika?

Yes, I used the Aerobika with saline, which was too strong for me. Then I substituted Albuterol with the Aerobika and that didn't help. And then the Aerobika only. So now I am relying on the meds to move forward and hope they serve me better!

As for myself, I find that I could better tolderate taking the inhaler med with a break in-between, same with saline, not the entire vial at the same time.

I have done that also to no avail. The medical field frowns on patients using just half a vial and saving the other half for later -- unless a person tosses the unused half. It's very frustrating, for sure!

Until recently I saw a pulmonologist and an infectious disease doctor for my MAC & Valley Fever. I now see only the infectious disease doctor who will order the blood tests and CT scans. If the CT results are not stable or impoving, I will return to the pulmonologist again. My pulmonologist made this recommendation.