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Has anyone taken bedaquiline (Brand Name: Sirturo)?

Posted by Mary @mjb24, 1 day ago

I found out today that I have become resistant to Azithromycin. My ID doc said to increase the Ethambutol to 1000mg and he wants to add Bedaquiline (Sirturo) which has some frightening side effects. Has anyone taken bedaquiline for MAC? Did you have side effects? Was it effective?

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westcottkm3040 | @westcottkm3040 | 1 hour ago
In reply to @mjb24 "@westcottkm3040 That is great! So glad it's working for you. I have been on it just..." + (show)
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@westcottkm3040 That is great! So glad it's working for you. I have been on it just over a year so maybe it just needs a little more time. May I ask why they put you on Clofazimine? Were you not converting to negative cultures on the typical drugs?

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@mjb24 I was and am still on the big 3. Azithromycin, raphampin and tge blue one. On for over a year and sputum still positive after only a few days testing. so added clofazimine and after 10 months finally got 2 neg samples. About to do a third test. So fingers crossed. They all but my guts and make me tired. Or Mac and BE does. Hard to say.

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