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Considering treatment for M. Abscessus

MAC & Bronchiectasis | Last Active: Nov 8 11:21am | Replies (40)

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@sueinmn

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.

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Replies to "Arikayce was still in Phase3 trials when I was treated. I stopped daily 3 antibiotic regimen..."

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

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

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