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Not treating mycobacterium Abscessus ?
I was diagnosed with mycobacterium Abscessus in Feb. I did a round of IV infusions of Amikacin, tigecycline and oral linezolid. Unfortunately I had an allergic reaction to that therapy about 4 weeks in so I had to stop that therapy. Now the doc wants to start me on orals of inhaled Aricayce , Nuzyra and eventually Clofazamine will be added. I am very hesitant to start on more meds when there’s no guarantee these will do anything to get rid of it and the risk of so many side effects. Is there anyone who decided to just stop the meds and monitor it my CT scans.
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@hcs Given your complicated health history, and the presence over time of M. Abscessus, have you considered consulting a MAC/Bronchiectasis specialty center? If National Jewish Health or Mayo are not options for you, there are now a number of recognized centers of excellence:
https://social.bronchandntm.org/directory/find-a-bronchiectasis-and-ntm-center
I had been diagnosed with M. Abscessus along with Pulmonary Aspergillosis last October along with bronchiectasis. I started treatment with Cresemba and will complete that course soon. Initially I was started on Nuzyra and Linezolid in January 2026 but because of severe side effects both were stopped by NJH 2/26 with the decision to focus instead on airway clearance and treating the Aspergillus.
Unfortunately my fatigue and shortness of breath have worsened and the CT shows new issues.
The decision has been made to start IV amikacin alternating with IV Nuzyra (to see if nausea is less) with intention to start Clofazimine. So it looks like either a central line or a PICC. Any experience with these IV medications? I am trying to plan ahead without worrying ahead.
@smtdoc …I had a 3 cm Cavitary mass,so I decided to have surgery because I couldn’t do the antibiotics….all 5 of them .
The only one that I didn’t have any GI problems was the Amikacin via a PICC line . …however ,giving myself the I.V was too impossible and stressful for me because it wasn’t just the Amikacin,but the saline flush and the blood thinner .If I stayed on it ,I would have gone to a center to have it done.
That's really helpful! On one previous episode I used Nuzyra via PICCbut I think that because I am a physician, now retired, the home administration wasn't a problem
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1 Reaction@lynne54 If your insurance is only in-network in Virginia, you could go to the only BE/NTM center in Virginia. It is at UVA. If you can go out-of-state, the centers mentioned in the previous replies have been serving the BE/NTM population much longer.
@visions63 …just to further discuss ,the Pulmonologist that I had at the time said that I just couldn’t take Amikacin alone,I had to take all the antibiotics or take none…..So,I took none and had the surgery.She then said post surgery that I had to do Sputum tests. I asked why since I can’t take the antibiotics. and I have no symptoms and my CT scan was clean. She then said if you have no symptoms then we won’t treat it ,but you should do them for protocol.
I didn’t and I’m changing doctors.
My husband did the medication for the mycobacterium Abscessus for four month. He had to stop because the medication almost killed him. Knowing that there was only a 40% change that the medications would help, he decided to stop all of them. My husband lived without any sickness for another 3 years. He passed in February of this year - not from the Abscessus. Hope this helps.
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2 Reactions@smtdoc I was on Amikacin & Imipenem-Cilastatin 3 times a day via PICC line. Did that for 5 months. No reactions, just took a lot of time everyday.
Very helpful!