M. accessus treatments? Inhaled colistin

coleen- did the respiratory test show any other type of bacteria. do you have a history of pseudomonas because dr Griffith at NJH told me that if there is infection or flare up its usually caused by pseudomona if you have them colonized and they treat it with Levaquin. But no matter what it is, when I had a flare up at the end of May- I was told to increase the airway clearing to 3-4 times a day -nebulize with salin, and use my inhaler (levalbuterol) every 4-6 hours. I understand that cough and fever and fatigue take away every bit of energy. Once you start using the med you have prescribed, you will feel better. By the way did you have a chest x-ray too? I really understand what you are going through.

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

@colleenburcar @fdixon63 and @lilianna have a really good point - One colony of M. Abscessus is probably not enough to make you feel really sick - is something else going on as well?
What else were you tested for, and do you have any recent CT of your lungs?

Thank you so much for your informative response. You’re right. My doctor said the same thing that one colony is not need for treatment. He did recommend starting inhaled Colistin today which will be delivered this morning. Of course I’m anxious about another medication in addition to the levaquin.

Faye: Thank you for your kind response and prayers. I am a faith-filled person, too. Since I only have one colony of m. Abscessus my doctor doesn’t feel it needs treatment. However since I am so sick and have been taking levaquin which doesn’t seem to be doing much, he’s starting me on inhaled Colistin. I’ve read that usually treats pseudomonas which I haven’t been told I have. I’ll keep you posted and will pray for you, also.

Yes, I did have a chest X-ray Monday which showed I have small left pleural effusion although not identified as pneumonia. My sputum samples have never said I have pseudomonas although I understand the Colistin I’m going to start today is usually used to treat pseudomonas.

Coleen, levaquin plus the illness made me very weak with zero appetite. Make sure you drink a lot of water ( I soak ginger pieces over night and then add water throughout the day) buy also ensure plus ( I like vanilla) because it’s 350 cal and drink even two if you cannot eat. It’s so easy to lose weight when you are sick and we guard every pound. Stay strong during the treatment.

And Coleen one more thing- take probiotics with different cultures and watch for thrush and east infection. If you have whole foods store they sell liquid probiotic in the fridge section which I take additionally to my daily capsule type when i have to take extra antibiotics. I will have you in my thoughts although I don’t know you personally. My best

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.

Lilianna:
Thank you for all your helpful ideas. I’m sorry you’ve been through this miserable illness, too.
No, I’ve never had pseudomonas. In the past I’ve had nocardia nova, aspergillosis and m. Abscessus all at the same time. The levaquin has taken my appetite and caused me to lose weight which I can’t afford to do. My fever continues to hover around 100 and I feel miserable.