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NTM - abscessus
I've been diagnosed with NMT abscessus. Out of 7 drugs, the only one it is susceptible to is Amykacin. However, according to an NIH study, it doesn't appear that amykacin will cure the abscessus.
Has anybody in this group achieved a cure for abscessus?
What drugs were you on? Single or combination drug cocktail?
For how long?
Anybody taken amykacin? It sounds like a very hard drug to tolerate and the manufacturer says not to take it for more than 10 days. How do you manage for 1-2 years? Thank you, Dian
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I was on IV amikacin three times a week through IV for four months in addition to azithromycin and ethambutol. My liver and kidney function was checked every week at the infussion center before getting IV. It made me tired but I survived it. I have MAC and BE
@lilianna
Thank you. That's helpful to know. I'm just beginning this journey.
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.
@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.
I have M Abscessus since last January. I was put on the big 3 for Mac in 2022 and it cleared. The MAC returned last January. My ID Consultant has adopted watchful waiting. I had an appointment with him on Thursday and he says that I will have to be treated for the Abscessus. He wants to put me on IV Amakacin but I have heard that the side effects are awful. I still work as a teacher 3 days a week and do not want to retire just yet. I was full time until I started the treatment for MAC the side effects were awful. I was on daily treatment for 14 months and had 6 months off work. I lost a lot of weight and was fatigued.
I am starting to feel like that again. I am interested to learn more about the 3 day IV Amakacin treatment and it is great to hear that you feel alright. Just curious to know if you are still working. I do daily airway clearance and exercise. No 2 days are the same! Just interested to know if others have done well on IV Amakacin and the other antibiotics for Abscessus. My experience with the big 3 is making me feel anxious about having anymore treatment. My weight is still low at 52kg and that is while I am on no treatment. Would love to hear how others have coped. Thanks