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Anybody else have a different experience with the Big 3 the 2nd time?

Posted by Tina Sims @tinaesims, Nov 22, 2023

I just started the big 3 for the second time. I was ready to start to get rid of MAC for the 2nd time. This time the rifampin gave me chills and nausea every time. I almost called 911 the 2nd time it happened. My doctor has temporarily stopped the rifampin. I go to Iowa City CF clinic in 2 weeks. I hope they can help this constant coughing. Anybody else have anything similar?

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rbl | @rbl | Nov 23, 2023

I tried Rifampin 2 separate times. I felt like I had the worst case of the flu after three days on it. I stopped it and my ID doc wanted me to try it again a month later to make sure it wasn’t the flu. After the first dose I got the flu symptoms again. It took about 2 weeks to feel back to normal.(whatever normal is these days). I was then put on levequin and now off that after 5 months because I have numbness in my toes and all joints hurt. I’m only taking Azithromycin and Ethambutol 3xw… no clue what’s next till Dec. the up side in this is I am not coughing much at all.

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sissir10 | @sissir10 | Nov 23, 2023

That is one nasty drug. I took it for over 13 months with the other two and for some reason developed a reaction to it. It put me in the hospital twice this year. After the second time with elevated heart rate of 150 and oxygen level dropping to 77 and a four day stay at hospital, I took my self off all of the drugs. I will never ever go back to the I.D. doctor again. I tried to tell him and he wouldn't listen. He almost killed me. I informed my Pulmonary Doctor, that he was in charge, because I wouldn't go back to that I.D. doctor again. It is well documented the side effect of the drug and the I.D. doctor should have known better.

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Rick | @rstel7272 | Nov 23, 2023

I went back on the big 3 a second time on the assumption Mac has returned. After 6 months of testing, referrals, etc I was diagnosed with aspergillus, not Mac. Other infections seem to follow Mac treatment. My second big 3 had no effect on aspergillus, so a change in treatment was made.

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noisylungs31 | @noisylungs31 | Nov 23, 2023
In reply to @sissir10 "That is one nasty drug. I took it for over 13 months with the other two..." + (show)
@sissir10

That is one nasty drug. I took it for over 13 months with the other two and for some reason developed a reaction to it. It put me in the hospital twice this year. After the second time with elevated heart rate of 150 and oxygen level dropping to 77 and a four day stay at hospital, I took my self off all of the drugs. I will never ever go back to the I.D. doctor again. I tried to tell him and he wouldn't listen. He almost killed me. I informed my Pulmonary Doctor, that he was in charge, because I wouldn't go back to that I.D. doctor again. It is well documented the side effect of the drug and the I.D. doctor should have known better.

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Do you mean the levaquin was nasty?
Or the rifampin?

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