1. < MAC & Bronchiectasis

Started big 3 10 days ago now have low grade fever

Posted by ladonnahc @ladonnahc, Jun 6 12:44pm

78 year old female. In good health besides these lung problems. This is my second time on the big 3. Took it about 14 years ago when I was then diagnosed with Non tuberculosis Bronchieactasis and MAC. Have battled a pseudomonas “colony” that has been treated in the past. Constant coughing chest tightness etc. yearly CTs and most recent bronchoscopy done last March 2023 that confirmed the mac was back. My pulmonologist decided since I had been treated in the past she wanted me to see infectious disease. After a year and another postsputum culture as well as the CTs showing consistent with Mac, he finally decided to treat. My big 3 meds are Mycobutin 300mg (150mg x2) daily
Ethambutal 400 x2 daily and
Azthromyocin 250mg once per day. I have been taking them for 10 days now. The last 2 days I’ve had a low grade fever 99.8-100.5. Left a phone message with ID dr but haven’t heard back. Has anyone had any similar experiences? I’m wondering if it’s related. If it’s the Mac or possibly pseudomonas. I’m not sure what to think. Thank you

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pfurcht123 | @pfurcht123 | Jun 10 10:11am
In reply to @greeneyes8 "HinSissir10. I felt the fever and nausea the first time on a Monday, felt better Tuesday...." + (show)
@greeneyes8

HinSissir10. I felt the fever and nausea the first time on a Monday, felt better Tuesday. Wednesday, next pill day, got fever and nausea again so I went to urgent care (connected to my primary care doc) and they all of the blood work and it showed nothing. Thursday I felt fine again. Friday, pillnday 3, all hell broke loose and not only did I get nausea and fever, but I got extremely weak and dilirious and couldnt function all within a few hours. Tests in the ER showed my kidneys went from creatinine of .5 on Wednesday to over 4 in two days and by the end of the first week it was over 10. They told me I was in acute kidney failure. I was shocked since I had always been in extremely fit condition prior. I was transferred to an acute care hospital where i had a 3 week stay. Two additional weeks of dialysis once I was released. I guess it could have been worse since I was able to get off of dialysis. My ID was unfortunately in the hospital himself at the time and his team did contact me but it was too late. My beef is that there was no warning of any kind regarding reintroduction of rifampin in the literature. I even tried to contact an attorney to try and get that changed but nobody wanted to fight the cause. Guess there wasnt big money involved so they all declined. If it were a class action type of suit they would have been interested I was told. Very unfortunate but either way the best I can do at this point is to warn people when I can about it. I am glad you stopped the rifampin and averted a crisis, though it was enough of a crisis, right? Wish you the best.

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It is extremely helpful to hear some of the sugg shared and great ideas re being an active participant in our tx. I Have one pos MAC sputum, CATs are text book MAC, my symptoms too are indicative of MAC. See ID next Mon. If I do go on treatment , I will take all your recommendations into acct. Weekly blood work at the start and one drug at a time. Rite now on High dose Zythro 500 mg. And no reaction, so it’s the Rafampin I will worry about.

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sissir10 | @sissir10 | Jun 10 6:11pm
In reply to @pfurcht123 "It is extremely helpful to hear some of the sugg shared and great ideas re being..." + (show)
@pfurcht123

It is extremely helpful to hear some of the sugg shared and great ideas re being an active participant in our tx. I Have one pos MAC sputum, CATs are text book MAC, my symptoms too are indicative of MAC. See ID next Mon. If I do go on treatment , I will take all your recommendations into acct. Weekly blood work at the start and one drug at a time. Rite now on High dose Zythro 500 mg. And no reaction, so it’s the Rafampin I will worry about.

Jump to this post

Yes, be very careful with the rifampin. Don't know why some ID Doctors continue to use this in the course of treatment. Seems a lot a people have problems with it, as did I. Make sure they do blood test on you along the way. Mine never ordered any. I refuse to see him anymore. He was more concerned with my vision and the Ethambutal. Wasn't a problem with me at all. Still have 20/30 vision at the age of 70.

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