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How to take Rifabutin?

Posted by reneemc @reneemc, Jan 3, 2024

I just got switched to Rifabutin and would like to know best time of day to take?

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Rick | @rstel7272 | Jan 6, 2024
In reply to @liangni1 "Yes,I am taking the 3 drugs since January 2023. At July I started Arikayce. During the..." + (show)
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Yes,I am taking the 3 drugs since January 2023. At July I started Arikayce. During the first two months of Arikayce treatment I had a severe cough with significantly increased phlegm production. Loss of appetite, tiredness, weakness. Itchy throat and hoarse voice。

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liangni1, I had a similar experience with arikayce, by the 5th month I could not finish a daily dose. Maybe last 7-10 minutes. At that time there were no guidelines for a reduced dose, Insmed was no help at all so pulminologist stooped the treatment.

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liangni1 | @liangni1 | Jan 6, 2024

I am so sorry for you have to stop the treatment.Do you mean you couldn’t finish a daily dose due to the terrible side effects such as severe cough? Is ok to rest a while then finish the treatment? Hope your pulmonologist finds other solutions to help you.Wish you get better!

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Rick | @rstel7272 | Jan 7, 2024
In reply to @liangni1 "I am so sorry for you have to stop the treatment.Do you mean you couldn’t finish..." + (show)
Profile picture for liangni1 @liangni1

I am so sorry for you have to stop the treatment.Do you mean you couldn’t finish a daily dose due to the terrible side effects such as severe cough? Is ok to rest a while then finish the treatment? Hope your pulmonologist finds other solutions to help you.Wish you get better!

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That was 3 years ago, my the time I got to NJH, I no longer tested positive for Mac but instead developed a fungal infection. I was very disappointed in Insmed and the terrible support over 5 months, especially at $6000 per month. They were great until treatment started then it was strictly hands off. At the time, my insurance denied any coverage at NJH. I'm sure I'd have done better with a reduced dosage or schedule.

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