← Return to Clofazimine for MAC: Anyone have experience with this drug?

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@almap

Hi Sue, she sees an ID doctor who does treat Mac but she is probably his oldest patient. Her sputum culture was positive and last CT scan showed maybe slight improvement. My mom wants to take a break from the antibiotics. She is tired of feeling so bad from them. We have an appointment on Jan. 31st to discuss. If she starts Clofazamine I think she will insist on taking a break from azithromycin and Ethambutol. I’m not sure what the Doctor will think of that. He does collaborate with National Jewish Health in Denver. She lives outside Milwaukee, Wi and unfortunately we don’t have a MAC specialist specifically. He seems knowledgeable though and is a good communicator. Is it common for MAC patients to take a break from antibiotics?

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Replies to "Hi Sue, she sees an ID doctor who does treat Mac but she is probably his..."

Pretty common, I think. Over 2 years ago, at age 68, not 88, with my doctors ' blessing, and consultation with NJH, I quit.

Actually, switched from antibiotics to daily 7% saline and airway clearance even though I still had a positive culture because the side effects were making me miserable. So far, I have recovered 80% of my lost weight and energy, and had only one exacerbation, treated with steroids and a short course of antibiotics.

Pretty sure the MAC is still there, but it's staying quiet. So, I understand exactly how she feels, And if she was my Mom, I would support her decision.

How do you feel about letting her try it for 6 months? And what do the doctors say.?

Sue