← Return to Taking other medications in addition to antibiotics for NTN

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Profile picture for lvnl @lvnl

I also see one of the NYU BE/MAC experts and I have heard from them that studies are now supporting "Big 2" (skipping rifampin) and/or 3 doses/ week. BUT I would research more or ask more questions since, for example, they have suggested they might recommend I stay on maintenance antibiotics since I did not clear MAC after 11 months of treatment ... Right now I'm in a 3-month watch and wait without treatment to see if the mild hearing loss I had, presumably from the meds, reverses or stabilizes.
So I would want to understand better whether protocols overall are moving toward 3x/week or if this might right now be suggested under more limited circumstances.

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Replies to "I also see one of the NYU BE/MAC experts and I have heard from them that..."

@lvnl & @kathyjjb There are numerous protocols for treatment. Some use 2 drugs (often based on sensitivity testing), some adding Arikayce or another drug right away. The decision between 7-day and 3-day dosing may be made based on severity of the infection, or what strain of NTM is being treated.

The usual protocol for beginning antibiotic treatment for MAC has been 3 times weekly for many years. My personal observation is that some ID docs not working in conjunction with a MAC-knowledgeable pulmonologist are more likely prescribe daily meds. I'm not sure why this is the case, but sometimes when that person gets to an expert pulmonologist, the dosage is cut back to 3 times a week.

If you want to see the published protocol from 2020, look at the table on page 20 of this document:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
New guidelines are coming, here is a preview that has not yet been published for the US:
https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.202408-904FR
It says, in part, "For less severe noncavitary NB disease, a thrice-weekly regimen is often adopted for its effectiveness and better tolerability than daily treatment."