Started big 3 10 days ago now have low grade fever

Good morning Ladonnahc. Please be very careful. That is exactly what happened to me when i was "reintroduced" to the big 3, but with Rifampin, resulting in acute kidney failure. I have been extremely healthy all my life until the MAC. Treated for 18 months, clear for a year then it came back. Started the big 3 again, 5 or so weeks into it - started with a low grade fever for a day. Next pill day, the same thing. I left a message for my doc, then the 3rd time taking the pills I got extremely ill, resulting in complete kidney failure. Rare side effect I am told, however there are others on this forum experiencing the same so i dont know how rare. I have since recovered half of my kidney function and feel real good. Rifampin was replaced with clofazimine and I am doing well with it.
Please be cautious and dont make the mistake I did. I should have stopped after the second time with a fever after taking the drug, but I had no idea there was a possibility of kidney injury. Nothing in the literature mentions it. Every day I could kick myself for not stopping the meds until i had contact with my ID. It would have made a huge difference. I hope you start feeling better.

Hello Ladonna, I had similar situation except that fever was 103-104 and I ended up in hospital. When I started the antibiotics I started all of them at once and apparently it was a mistake. If they are introduced gradually you can observe how you react. For me , through elimination process it was decided that it was rifabutin that affected my liver. It was replaced with clofazimine. Ask for blood work and check liver and kidney function. Ask your family doctor, explain the situation and do it very quickly. Do not wait.

Did your physicians do regular blood draws to check liver and kidneys. I am getting blood draws every two weeks for six weeks, then decreasing to once every few months, to monitor liver and kidney function. The bloodwork can show liver and kidney issues developing. I am on rifabutin, clofazimine, and ethambutol and amikacin, and that's what they're doing for me.

I hope for the best for you,
Mokie

Thank you so much for your reply. I had bloodwork done and chest X-ray. Labs were normal. ID dr said to stop the antibiotics over the weekend to see if my fever goes down. If it does he said possibly will lower the dose or take MWF instead of daily. I haven’t taken the antibiotics in 2 days now and still feel the same. I’m hoping to suggest switching the rifabutin(mycobutin) to something else if this reaction is caused from it. After a long time with symptoms and positive results I’m desiring to be treated in hopes of feeling better but not liking the side effects.

Rifampin almost killed me. I took it for over 14 months along with the other 2. I started running low grade fevers on the 3 days I took them and just feeling crappy like with flu. Called my ID doctor and he never called back, so I went off them. I got scared after a month and started back on them. That landed me in the hospital for over 10 days with everybody trying to figure out my blood work when I kept telling them about the antibiotics I was on. Came home and stopped taking them, PERIOD! I had the hospital follow up with ID doctor and demanded he return my call. He did and said to take one at a time to figure out which one it was. Guess what? Next day I took the Rifampin and it almost put me in cardiac arrest. 911 was called and I spent my time in ICU. I am off of them all, the MAC is gone and I REFUSE to see that quack of an ID doctor again. I told my Pulmo Doctor, he could treat me for it, if it comes back again but to NEVER EVER send me to that ID doctor again! Scream your head off and the Doctors if you need to. I've learned the hard way to be a pain in their arse.

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.

Good Morning Ladonna, Everybody reacts differently. Complete blood work was done on me 2 days before complete the kidney failure and it was normal. Thats how quick it could potentially happen. Sounds like you are in good hands and I wish you the best.

I also had a drop in kidney function when rifampin was reintroduced- not severe but then I had to stop it because of a platelet allergy
Took a long time for complete recovery of kidney function- maybe a year or so
Lots of doctors are not using it any more- I switched to clofazimine but only got totally MAC free when Arikayce added

I am so surprised to hear about the kidney problems with Rifabutin. I was on the big 3, including rifabutin, and became so ill with fever and chills and muscle aches, etc...I stopped taking them all and will not ever take Rifabutin again. So now what? My pulmonary doctor referred me to an Infectious Disease doctor but I have been unable to get an appointment for months!! So very frustrating!!!

Yes my ID dr has me on the same schedule as you. For me this fever started 10 days after taking the meds. First set of labs was normal. I’ve stopped the meds for the time being. The fever has come down now but I still don’t feel well.