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I have mycobacterium abscessus with absecessus sub species. Do you know what sub species you have there are three of them and some of them other than the one I have are easier to treat.
I have been on IV Amikacin 3 times a week since May so 6 months so far. Dr will keep me on it unless I have change in my monthly hearing tests. I don’t really notice any side effects from this. I am also on two oral drugs.Nuzyra and Sirturo. I have minimal side effects with these three drugs. My doctor trained at National Jewish and this hospital is the gold standard for treating these infections. He offered to let me come off of the IV drug if I agreed to a third oral drug called clofazamine which I have refused to go on since day one due to the side effects. It can turn your skin any color from yellow orange tannish brown gray black.
Replies to "I have mycobacterium abscessus with absecessus sub species. Do you know what sub species you have..."
I have been on Nuzyra, Clofazimine for 4 months and lasted 3 months on Arikayce nebulized..that was rough. Zero side effects with the other two... I researched the skin discoloration exhaustively before starting it and it's very rare and I have had no problem at all. They don't seem to be working tho... I have a small cavity and it seems to be growing in spite of meds ...so disappointing. I have an appointment with my pulmonary in the morning I think they're going to have to do surgery on that cavity.
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@susies215
They keep telling me I have subspecies abscessus. I'm not on any treatment yet. Will get another CT scan in December to see how fast my nodules are growing. I'm at 3 and 5mm now.
Where are you located and who is your Dr? I'm in Phoenix and going to the Banner Lung Inst. I'm trying to learn as much as possible about this. Thank you and good luck in your treatment.