Rifabutin and trikafta

Hi all,

I figured I would post here just in case anyone else has experience with this, but I am also working with my Cf specialist and infectious disease specialist (and national jewish) as well so I do have good input. I have long standing mycobacterium avium (MAC) infection. I have been treated on and off for this for about 10 years with decline in lung function from 100% to 60% and im 37 years old with homozygous DF508 mutations. Last year when trikafta came out we all decided to stop my mycobacterium treatment to see if trikafta would help. Rifabutin (rifampin etc..) are contraindicated with trikafta as it significantly decreases the ability of trikafta to actually do its job (bioavailability). Trikafta did help me a lot! I felt I could breathe better, my PFTs increased about 5%, I gained 7 pounds, etc... however I got a CT scan in October and it showed obvious progression of my MAC with more and larger nodules and cavaties. We decided to treat and have been doing so since December. My MAC is resistant to some antibiotics and I’m also allergic to a few others so rifabutin is one of the only good options I have for this. We tried it again even though it isn’t indicated for people taking trikafta. I immediately noticed a difference and my trikafta seemed to not work. I tried taking it and then not taking it and then taking it again- when I didn’t take it my trikafta seemed to work better. So now we are trying to find a different antibiotic for my MAC treatment (weird options are on the table I don’t even remember what some of the drugs are called). I’m currently taking clofazimine (an experimental drug), azithromycin, and rifabutin. Has anyone experienced taking rifabutin with trikafta, and, if so, how did it work for you.
Long rambling post-sorry for that.
 

DougB

New member
Thanks for the story. I do not have experience with rifabutin and trikafta. I do, however, have mycobacterium abscessus and take clofazimine and azithromycin. I started taking trikafta at the beginning of this year and have had a great response to the drug. I was taken off one of my mac antibiotics called situro and my ct show significant improvement. My ID MD is considering taking me off all antibiotics for my mac. I am sorry that you are having problems taking rifabutin with your trikafta. Here's hoping you find a solution. It seems everyone has a different reaction to trikafta. I do not have the DF508, rather, I have two very obscure mutations yet I reacted so well to the trikafta. Other people with my mutations do not react as well. There is still so much to learn about CF.
 
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