M. accessus treatments? Inhaled colistin

Colleen. I've never been prescribed Colistin for my pseudomonas. I've had Levofloxacin, Ciftazidime (via PICC line) inhaled Tobramycin and Cipro. If I do have M. Abscessus confirmed it will be at a level that I can just continue the AWC and "watch and wait." My pulm. wants to put me on brensocatib once it FDA approved, which should be this fall.

Colleen. I've never been prescribed Colistin for my pseudomonas. I've had Levofloxacin, Ciftazidime (via PICC line) inhaled Tobramycin and Cipro. If I do have M. Abscessus confirmed it will be at a level that I can just continue the AWC and "watch and wait." My pulm. wants to put me on brensocatib once it FDA approved, which should be this fall.

Faye:
From what I’ve read Colistin and Tobramycin are similar and both are inhaled. I’m on levaquin, although tomorrow is my last scheduled day.
How are you feeling now? How long did it take to see any type of improvement? My fever remains around 100 and my blood oxygen is falling.
Colleen

Has your pulmo explained much about why he feels the brensocatib will be helpful? I also have chronic Pseudo and my pulmo mentioned it awhile back.

Colleen. I'm not sure how to answer as I've been on and off Tobramycin for almost 5 years. Some of the time has been rough. I've had different treatment periods--14 days on and 14 off or 28 days on and 28 days off.) When I'd go off of it and begin to get my strength and appetite back I would have to go back on it. I had to be taken off it completely early this year. Currently I'm doing OK but just waiting to get the report back regarding M Abscessus. Hope this is helpful.

Irene: All he said was that he would put me on it because I keep getting pseudomonas. I'll get more information once it's FDA approved. Good to weigh out the pro's and con's. Our doc's apparently are hopeful. It would sure be good to have something to break this cycle.

Faye:
I am sorry to hear we’re going through similar struggles. I’m completing my third day of Colistin with no improvement yet. I have to continue it for 30 days. What type of fever did you have? Mine continues to run near 100. I get relief when I take Tylenol but I can’t do that for extended periods. Also, my blood oxygen drops into the 80’s when I climb stairs.🙏❤️🙏

I wonder when they say keep getting Pseudo if it ever went away and came back? Or if it just recedes and re emerges. Hope it can help those of us with Pseudo somehow.

Hi Coleen, I'll be following this post as I have similar situation. I have bronciectasis, MAC (which seems to be in remission), and apparently colonized pseudomonas. A sputum done a few months ago came back M. Abscessus. My pulmonary doc wanted to do a second sputum to confirm before discussing treatment. It will be a few more weeks before the final results comes back from the second sputum. Were you told the M. Abscessus is faster growing than MAC? That is what he told me so that's concerning while we wait to confirm.
I'm so sorry your having so many symptoms. I've had fatigue over the last week but otherwise OK, symptom wise. I think I've done myself a disservice by making my nebbing as easy as possible. I've now gone to a Pari LC Plus and it is causing coughing and bringing up colored sputum. That tells me I had become too lax with my airway clearance and this is the result.
I'll pray for you and all who suffer with this condition. Blessings to you going forward. Faye