Anyone Referred To National Jewish Health Due To Intolerance To Meds?
I was diagnosed with MAC in August 2022 and put on the big 3 3x per week. Initially I was okay other than gastro problems with the azithromycin but it wasn't all the time. However I started getting neuropathy and hearing loss. After 16 months, I couldn't tolerate the neuropathy any longer and had to get hearing aids so the doctor thought I was okay to quit the meds. Two months later I got a positive sputum sample. So now the doctor wanted to put me on azithromycin, rifabutin and Arikayce every day. I did the azithromycin the first week and it gave me gastro issues which I expected, then I added in the rifabutin and it got completely intolerable. I was bedridden and I had to stop. My new ID doctor (old one closed his practice), said I should try watchful waiting and diligent airway clearance. She is ordering a vest for me. However, my pulmonologist said I should consult a doctor at National Jewish Health. Has anyone else who could not tolerate the usual drug treatment gone to NJH? And if so, did they prescribe any different drugs for this that worked for you?
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