Discontinuing MAC antibiotics

Wow - Big guns! Helen, if I were in your place, I would really press the doctor to "back off" the 3 antibiotics to 3 times a week and see if you feel a little better. I think some of doctors really don't understand how awful the daily therapy is - for me it was FAR worse than every other day. Another option, which my ID doc let me do once, was a 2 week "antibiotic vacation" - it helped some as well.

Do you feel like your doc would be willing to do a CT to see if your lungs are improving, then consider adjustments? If you don't feel they listen to you, would you consider being seen at Mayo, NJH, or another lung specialty center?
Sue

Thank you Sue for responding and yes very rough. I so believe my doctors don't understand how bad these make some of us feel. I had a sputum culture done 2x and waiting on result s which can take up to 6weeks. I am praying there negative. I have asked for a break or too go 3× week and my ID doctor discouraged as my cavity was too large and all over the place. I am trying to wait for the 2 different sputums as her pointed out I have only been on the meds 2 months. I expressed since starting I am way worse now than before starting. I started looking up appts at mayo but everything is so far not sure what other lung centers out there and can you please suggest ideas on how to change the way I take the 3 meds and Ariykace as everything I have read is when they 1st started meds, what about 2 months in? I currently take them in the morning and the rifampin and Ariykace in the evening before bed. Should I try taking all at night? Any suggestions will be appreciated. Thank you.

Sue, thank you and WOW! I made a huge assumption (and mistake?) that the ID Doc I was being referred to by the Pulmonologist was a specialist in MAC. I never even asked if he was! Also - no- there has been no discussion of a daily airway clearance routine or any other treatment beyond these three antibiotics. Again, if I don't know to ask, information has not been offered.

I did call today and said I needed to talk about other options - hope to talk to a human being at some point. In the meantime, I have taken myself off this approach. I expect I will feel much better in 24 hours. I have a lot to learn here! Thank you for helping to educate me. Pat

My 1st culture just in and negative. Praying my 2nd one submitted is also negative.

That will give you "ammunition" for push to go to 3X week, and maybe cut back Arikayce?

Another question - did they explain that you need to be conscious of changes in vision or hearing? Was you baseline hearing tested before you started?
Doing so would indicate some level of familiarity with this regimen.
Sue

Have always heard about digestive issues on the antibiotics. This was the first I heard of leg & back pain. My leg pain has gotten worse since on the antibiotics. Quests I need to ask about that. Thanks for sharing

Update since my initial post. My husband Bruce took a break from the 3 MAC antibiotics and Arikayce, four weeks ago. He had taken all of them daily for close to a year due to severe and deep cavitary MAC.
The break has been beneficial. His appetite has come back, GI issues are gone, brain fog has lifted somewhat, and he is gaining weight. Five pounds regained from 25-30 lost since last November.
He is continuing to nebulize Albuterol and 7% saline.
Shortness of breath is still debilitating. Bruce’s MAC team is working on getting him supplemental oxygen.
IF, big IF, he goes back on the drugs his ID/Pulmonologist will not include Azithromycin since she strongly suspects it triggered the GI and weight loss issues. It also flunked Bruce’s last round of drug sensitivity testing.
Dr. also wants to switch out Arikayce for nebulized Amikaycin. The liposome suspension used for Arikayce is a trigger for SOB.
We will confer with Bruce’s doctor following his next CT at the end of the month and after another lung function test scheduled in December.
8 cultures to date, with a 9th percolating, have been MAC clear.
Keeping our fingers crossed that he can take the nebulizing route @sueinmn has followed perhaps with the addition of oxygen to reduce the SOB issues.
We wouldn’t have known to advocate for the drug break without the knowledge gained from this discussion group.
You’re a phenomenal bunch. ❤️
Melissa

I gave 3 sputum samples and waited for a month to find that one sample came back with MAI. My pulmonologist started me on the antibiotic blitz well before we submitted the samples. Lucky.

They did. Checked liver levels; did both a baseline hearing and vision exam. I sense they are familiar with the disease; I also sense their ability to work with me to arrive at an acceptable treatment plan is dictated by a heavy patient load and a "trial and error" mentality. In deciding to discontinue this regimen on Tuesday, I called and have yet to hear back from them. (Already feeling better!) Have my first support-group meeting on the 17th and will seek advice locally about whether a change in ID doctors is even possible. Pray for me! And thank you for your responses!