Considering treatment for M. Abscessus

Arikayce was still in Phase3 trials when I was treated. I stopped daily 3 antibiotic regimen in 2019 due to the side effects (I was still testing positive) and have relied on airway clearance, exercise and monitoring for 58 months. My latest CT this week showed stable bronchiectasis and no evidence of infection. I have been unable to provide a good sputum specimen, but it will be tested as soon as I can.

I believe my experience is a testament to the effective 7% saline and airway clearance.

I have tried 2x to answer this and my post seems to vanish. Arikayce can be used to treat Abscessus but cannot be used as the only treatment. So since I have MAC and Abscessus, if you add Arikayce to treat the MAC, you must add additional antibiotic treatments for the Abscessus. Abscessus reponds to different antibiotics than MAC.

That's really great! I hope you continue to do so well! I don't recall if you were dealing with just MAC or M. Abscessus or both. Would you mind just clarifying? Thanks

I had MAC and Pseudomonas. The only time M. Abscessus showed up in my culture it was determined to be an "artifact" - either from nasal mucus or contamination.
But clearing the Pseudomonas took 3 months and several tries at antibiotics. Finally it succumbed to inhaled Tobramycin. That delayed starting my MAC medications because the pulmonologist and my primary didn't think my body could tolerate all of it at the same time.

That was not the most fun time in my life, and my mind has been working hard to block the memories.

I am 86 and last winter started the 5 antibiotic treatment for M Abscessus and MAC. I reacted so badly to the treatment, that the Docs took me off everything after about three months and I have been on zero antibiotics since. My reaction was bad enough (lots of weight loss, vomiting, no energy or appetite, etc) that it was felt this was not the right approach for me. So far, the only other solution is to do the nebulizer and percussion vest twice a day and hope for the best. So that is my routine and , although I still have a very active and productive cough, I feel better and living almost a normal life. This may not be the right answer for younger sufferers but seems to be the proper solution for me.

Hi Sue. Glad to see your post. In May my sputum showed Pseudo was 4+ and M. Abscessus for the first time. In August 2024 it was a 2+ and a 1+ Pseudo and no MAC or abscessus shown. Not sure why sputum would not show abscessus. I'm hoping it might be a case like what happened to you. Maybe the sputum was contaminated. As far as the abscessus goes, I've had two positives in a row and now two not showing abscessus. I'm hoping that this means I only have to concentrate on treating the pseudomonas. My pulmo does not worry about treating it if I'm feeling OK--which I am. I do neb twice a day with Sod Chlorid--I mix 3% and 7%. I had been on Tobi off an on for the past five years. I was taken off it finally as I just could not take it any more.
Overall, I feel blessed that I seem to be doing OK--especially not positive for MAC for a few years. I'm going to check with my pulm to see if we can check sputum one more time before I see him in December.

Good to hear. I go to njh November 17. I am on nothing right now. Positive sputums after two years on big 3. I had ct scan last week afraid to read results. Have ifd dr next week. I am coughing 24/7. I Hope njh can help

Also I have compression vest and nebulizer with albuterol and 6% saline

Yes, I hope they can help you. Wishing you all the best at NJH! I hope you'll keep this group posted on how goes there.

Sue- Just read your comment regarding CT "no evidence of infection."
I did not know that the CScan can also show that one has an infection.??????

Interesting what you did: "I stopped daily 3 antibiotic regimen in 2019 due to the side effects (I was still testing positive) and have relied on airway clearance, exercise and monitoring for 58 months."

I have not had more than a 1+ so far for an infection with the sputum testing results. My PFT is off the scale in the right direction. CScan showed two areas improved and less inflammation. HOWEVER, new showing of plugging in lower left lobe. I will work harder in/on that area in hope of clearing it out.
Tyler has suggested I go on just two of the antibiotics....Ethambutol and Azithromysin. I am waiting on getting baselines for eyes and ears before I start and as well before starting I am going to be even be more on top of what I eat ( no ice cream)...my everyday supplement intake, includling probiotics, for the next few weeks before starting the antibiotics. Wanting to improve further my systems/ immune system before taking the antibiotics. Overall I have felt well since diagnosis in 8/22...it is just the constant need to clear the substance from the back of my throat.
With that said, if I do start the antibiotics it will mostly be to see if it helps me from having to constantly clear the build up of the substance (mucus etc. etc.) that gathers in the back of my throat. I can mostly tell when mucus plugs come up, it feels different when I bring them up with the other substances.
I keep in the back of my thoughts the decision(s) I have read about on the blog site and will go with my "gut" feeling about starting the antibiotics after a few more weeks due to all I want to do in preparing myself with before starting.
Any thoughts or suggestions are appreciated.....even opinions with notations of 'my opinion'. As often said, with thoughts of knowing ourselves etc., we have to do what we believe to be best for ourselves, our body and the remaining time on this earth. I have reached 17 days into year 82 and I remember the decision made for your Mother regarding the antibiotic routine.
Waiting also on the results of the last two sputum samples submitted and accepted for full testing.
Hoping you are able to hear 'good to go' on the sputum sample you are/have submitted.
Barbara