Connect
Mycobacterium abscessus
A supportive friend is seeking info and experiences of individuals dx with mycobacterium abscessus and treated with nuzyar. Trying to support a friend recently dx with mycobacterium abscessus and prescribed Nuzyar. Treated for MAC with 3 core antibiotics for approximately 8 mos. Following scope and culture she recieved new dx and medication recommendations. Insurance is denying coverage of nuzyar and she has been referred to Lung Clinic of UTTexas Tyler. Friend has clinical symptoms of fatigue which not sure is related to disease or antibiotics. Does not have much of a cough and produces no sputum. Dr has not done any chest x-rays. Anyone with info and similar experiences willing to share will be greatly appreciated.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
My insurance also denied coverage of Nuzyra, NJH was going to replace nuzyra with Clofazamine. I was on Arikayce, Linezolid, and Nuzyra (which my ID doctor gave me samples) for 3 weeks, went to NJH and fortunately after my 2 week evaluation, they took me off of all antibiotics, due to low MAB count. The NJH ID doctor determined my Linezolid dose could be cut in half, Arikayce would be replaced with inhaled IV Amikacin, and the Nuzyra replaced with Clofazamine.
@kathyjjb why was NJH of the thinking that the Arikayce would be replaced with inhaled IV Amikacin?
I could not talk at all. And that is what they had me try, inhaled Amikacin in a nebulizer. Apparently, they are using it. Sorry, I haven't researched the viability-since the drug therapy was stopped. Now, I just read my culture test result and trace pseudomonas showed up.
Is there anyone being treated for MAB that does not produce sputum for culture analysis. How is progress or lack of progress from treatment monitored.
I am being treated for MAB, and also have refractory MAC. I was on IV amikacin, Imipenim and tigecycline to get the MAB under control, now the focus has shifted to keeping the MAB managed and dealing with M avium and M intracellulaire, which are still present even after two long rounds of the big 3.
I am currently on Arikayce, bedaquiline, erythromycin, azithromycin, clofazimine.
To answer your question, I have never been able to bring up enough sputum for testing, even with the help of physiotherapists, airway clearance, and doing everything I can. To get samples, I undergo a bronchoscopy. It’s the only way. I have these about two to three times a year when infection is active and depending on my symptoms.
However, since starting to nebulise arikayce, I have been able to bring up some sputum - so I’m hopeful!
I also report regularly on symptoms such as coughing, fatigue, night sweats, weight loss and appetite. It helps to get a picture on what’s going on. I also occasionally have CT scans when they want to look at progress or otherwise.
How are you being monitored?
I have or had MAB and was taking nuzyra, IV Amikacin, and Linesolid.
I to don’t produce much sputum, and I’m being monitored with CT scans. They started with tigecycline but it made me sick as a dog. My insurance then let me get the nuzyra, but the drs had to send in a pre authorization request every month. The ID dr took me off all 3 after abt 6 months due to side effects. Since then, my CT scans still show some lung areas (nodules?). Some have “resolved” since I’ve been doing the 7% saline nebulizing and the Aerobika, so I’m a believer in both.