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Having side effects with both rifampin and rifabutin. Anyone using an alternative to these?

In: General Discussion
1 1394
i

Hello, my first time on this blog! In 2017 I began the 3-drug regimen of azithromycin, ethambutol, and rifampin. After 12 months with no side effects, my platelet count suddenly began dropping, which was attributed to the rifampin and I was taken off it, and left on just the other two antibiotics for the remainder of the 18-month regimen. Regimen stopped after the18 months based on CT scan. Had another CT scan this past March and NTM is back. I'm not convinced that it was ever gone. Was started back on regimen, replacing rifampin with rifabutin, which I could not tolerate due to gastrointestinal issues.

Is anyone currently using something other than rifampin or rifabutin as their third antibiotic along with the azithromycin and ethambutol?

My physician is recommending that I begin with amikacin, but tells me that it is supposed to be used in addition to the 3 antibiotics.

Latest Activity: September 16, 2019
11
1 Replies

Replies

K

Hello! The link below offers information on a study that was researching the possibility of 2 drugs vs.3 drugs. I don’t know whether or not it is still open to participants; however, it may be worth researching.https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/93/MAC-Patient-Advisor-for-Study-Advisory-Panel

Wishing you the best! Kati

Latest Activity: August 19, 2019
9

Comments

J

As of September 16, 2019 the website still says it is in the recruiting stage hoping to reach 500 participants.

Latest Activity: September 16, 2019
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