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Q what to expect starting big 3 ? Is my heavy flu reaction normal?
MAC & Bronchiectasis | Last Active: Dec 25, 2025 | Replies (10)Comment receiving replies
After about one week, I developed a severe flu like reaction to RIFABUTIN. Several other people on this group also reported similar flu like symptoms. I had been on azithromycin and ethambutal for four months when my doctor started me also on RIFABUTIN. It peaked on day 13 with a trip to the urgent care and they sent me to the emergency room to check for sepsis. My fever was very high. 8 things in my bloodwork were abnormally high or low. It was pretty much the sickest I have ever felt in my life. I think this is a very real side effect from that medicine that is not documented. My doctor only said my urine would be orange. He mentioned nothing about the possibility of a flu like reaction. I stopped that medicine immediately and remain on the other two but sadly, after seven months, I am not seeing any improvement in my symptoms. The side effects from those two have been mostly mild and have not interfered in my life significantly.
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@lucie0948 I also had a severe reaction to the rifabutin. My doctor put me on it after I was on the Big 3 every other day regimen because the MAC returned 3 months after finally stopping the Big 3 after 16 months. I was supposed to take it every day with azithromycin and also Arikayce inhaled. I never got to the point of starting the Arikayce because the side effects of the rifabutin were so bad. Also, the azithromycin gave me tinnitus and hearing loss and the ethambutol and rifampin from the first drug regimen gave me neuropathy. So I am doing watch and wait now with nebulizing 7% saline and using an Afflo vest. So far so good.