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I have Extrapulmonary Mycobacterium Abscessus subspecies: Abscessus (macrolide resistant) in my paranasal sinuses but I hang out here because our treatments are very similar and the advice is invaluable. I have been taking Bedaquiline now for almost 6 months and will be stopping treatment soon. Concurrently with the Sirturo I took other drugs Imipenum and Tigecycline (Tigecycline taken for two months stopped due to nausea and dizziness) then trials of Nuzyra and Eravacycline which caused worse nausea. Currently Clofazimine was just added to the Imipenum and Sirturo to keep the three drug cocktail going. I have had no problems tolerating the Sirturo however during the first two week induction phase where you have to take 4 pills daily I found it a bit hard on the stomach after the first week. Then after those first two weeks are over you'll be taking 2 pills three times a week. I do take Zofran twice daily to cover daily nausea mostly caused by the three drug cocktail in total. I have weekly blood labs done and also EKG's at least every two weeks to monitor the QTC interval. I don't feel perfect yet, hoping that the 6 month treatment is enough - all MRI testing shows improvement and no cultures have grown Abscessus since the original finding back in May. Good luck with your journey and hang in there. It sucks but there is a light at the end of the tunnel. Take care.

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Replies to "I have Extrapulmonary Mycobacterium Abscessus subspecies: Abscessus (macrolide resistant) in my paranasal sinuses but I hang..."

@oceansue
I'm curious how this was diagnosed in your paranasal sinuses. What were your symptoms?

@oceansue Thank you so much for sharing your experience. My doctor mentioned having to increase the EKG's, I already have regular ekg's because of the Clofazimine but the risk will increase adding Bedaquiline. I hope your tests results keep coming back good so you can complete your treatment.