Has anyone taken bedaquiline (Brand Name: Sirturo)?

@mjb24 Wow, that is one powerful drug, normally used for multi-drug resistant TB. The published literature actually says not for NTM. Did the doctor order sensitivity testing to be sure your strain of infection is susceptible to Sirturo? If not, maybe ask that it be done before you agree to try it?

I'm curious which other antibiotics ( like Arikayce) you may have tried?

@sueinmn Yes, he has ordered sensitivity testing. I forget where he said it needed to be done but they are taking care of that. I am currently on Ethambutol, Clofazimine and Arikayce. The Azithromycin I just stopped. I had to stop Rifampin and then rifabutin awhile ago because of intolerance. I was also unable to tolerate Linezolid and Nuzyra. I have been to UF Health in Gainesville for a 2nd opinion and Dr Mugallinski also mentioned a dual lactam therapy (imipenem and ceftaroline). That is still a possibility, however, my ID doc thought we should look at Bedaquiline first. He said that it may be difficult to get insurance to cover the other and it would mean 2x a day IV treatment.

@sueinmn Yes, he has ordered sensitivity testing. I forget where he said it needed to be done but they are taking care of that. I am currently on Ethambutol, Clofazimine and Arikayce. The Azithromycin I just stopped. I had to stop Rifampin and then rifabutin awhile ago because of intolerance. I was also unable to tolerate Linezolid and Nuzyra. I have been to UF Health in Gainesville for a 2nd opinion and Dr Mugallinski also mentioned a dual lactam therapy (imipenem and ceftaroline). That is still a possibility, however, my ID doc thought we should look at Bedaquiline first. He said that it may be difficult to get insurance to cover the other and it would mean 2x a day IV treatment.

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.

@mjb24 I am glad your docs are on top of things. I hope they find a solution that can work for you.
Hugs!

@mjb24 how long have you been on clofazimine? I’ve been on it a year almost and am getting negative mac cultures now. Hopefully it will help you.

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.