C.T. scan at 9 months of antibiotics

@kasper1 Did they also do a sputum culture to see if the bacterial load is decreasing?

@sueinmn no they have not done a sputum test in months . Just blood work.

@kasper1 I just finished treatment for MAI, and also had cavitary disease. My sputum was tested monthly. Because of the cavitary disease, I also had multiple CTs during treatment (total treatment duration 13.5 months) to confirm response to treatment. If you have been treating 7 months and your sputum has not converted and your cavity is growing, to me, a fellow patient, it seems your medical team should be reassessing their approach. The fact that they have not done so suggests to me you do not have true NTM experts treating you. If I were you I would want a second opinion ASAP from one of the top specialty BE/NTM care centers. Unfortunately it can be difficult to get into the specialty care centers quickly, they often have long waits. I will add I don’t think it is a great idea to unilaterally reduce your treatment protocol from 7 to 5 days per week. Have you discussed this with your medical team? The 2020 treating guidelines state that those with cavitary disease are less likely (they may even say unlikely) to convert on less than daily treatment. Generally speaking, all patients’ treatment regimen should be reevaluated at 6 months if their sputum has not converted. Often, the decision is made to add Arikayce. Because of my cavitary disease, I started treatment with Big 3 and Arikayce. Patients with cavitary disease are often (usually?) started with the Big 3 and an aminoglycoside, either IV Amikacin (see 2020 treating guidelines) or Arikayce depending on the circumstances. Obviously we are patients on this list not doctors so as to your fundamental question “is this right?” none of us can answer that. But from one patient with cavitary disease to another, I think you need another set of medical eyes and preferably those of a true NTM expert. Below is the link for finding BE/ NTM specialty care centers. If you want to discuss further DM me. Good luck! https://www.bronchandntm.org/For-Providers/Clinical-Care/Care-Center-Network/Participating-Centers

@bayarea58 I was started on the Arikayce but made me very sick . Lost my voice , and could not breathe on it . It took 3 weeks after I stopped the arikayce to be able to breathe again . I have been thinking about reaching out to the Cleveland clinic that is the only 1 close to me . There is not a specialist in Indiana. Also not sure my insurance will cover it .

@kasper1 I just finished treatment for MAI, and also had cavitary disease. My sputum was tested monthly. Because of the cavitary disease, I also had multiple CTs during treatment (total treatment duration 13.5 months) to confirm response to treatment. If you have been treating 7 months and your sputum has not converted and your cavity is growing, to me, a fellow patient, it seems your medical team should be reassessing their approach. The fact that they have not done so suggests to me you do not have true NTM experts treating you. If I were you I would want a second opinion ASAP from one of the top specialty BE/NTM care centers. Unfortunately it can be difficult to get into the specialty care centers quickly, they often have long waits. I will add I don’t think it is a great idea to unilaterally reduce your treatment protocol from 7 to 5 days per week. Have you discussed this with your medical team? The 2020 treating guidelines state that those with cavitary disease are less likely (they may even say unlikely) to convert on less than daily treatment. Generally speaking, all patients’ treatment regimen should be reevaluated at 6 months if their sputum has not converted. Often, the decision is made to add Arikayce. Because of my cavitary disease, I started treatment with Big 3 and Arikayce. Patients with cavitary disease are often (usually?) started with the Big 3 and an aminoglycoside, either IV Amikacin (see 2020 treating guidelines) or Arikayce depending on the circumstances. Obviously we are patients on this list not doctors so as to your fundamental question “is this right?” none of us can answer that. But from one patient with cavitary disease to another, I think you need another set of medical eyes and preferably those of a true NTM expert. Below is the link for finding BE/ NTM specialty care centers. If you want to discuss further DM me. Good luck! https://www.bronchandntm.org/For-Providers/Clinical-Care/Care-Center-Network/Participating-Centers

@bayarea58 I was started on the Arikayce but made me very sick . Lost my voice , and could not breathe on it . It took 3 weeks after I stopped the arikayce to be able to breathe again . I have been thinking about reaching out to the Cleveland clinic that is the only 1 close to me . There is not a specialist in Indiana. Also not sure my insurance will cover it .

@bayarea58 I was started on the Arikayce but made me very sick . Lost my voice , and could not breathe on it . It took 3 weeks after I stopped the arikayce to be able to breathe again . I have been thinking about reaching out to the Cleveland clinic that is the only 1 close to me . There is not a specialist in Indiana. Also not sure my insurance will cover it .

@kasper1 I on RX treatment including Arikayce for 3 weeks and I immediately lost my voice and when I went to NJH in Denver, I could not maintain blood oxygen, so I was put supplemental oxygen for the duration. I was allowed to stop RX treatment as my MABC load was decreasing prior to even starting the antibiotics, but before the ID doctor realized that and reviewed all my tests, she told me: 1. I could reduce the Arikayce from daily to 3/week and 2. Try nebulizing Amakacin. I am currently being monitored but if I need the antibiotics down the road, I will look into the inhaled Amakacin versus Arikayce.