@windwalker and @sueinmn
Thank you so much for your responses and advice when I said I was going to stop treatment. I know it would have been better to discuss stopping with my ntm doctor before changing anything but she was leaving the University of Chicago for Tyler, Tx and was no longer seeing patients here and will start in Tx on Feb 1 and I needed to do something. At the end of this month, I have an appointment with the bronchiectasis specialist who referred me for ntm treatment. When MAC was found in my sputum, the plan was that I would return to her for my pulmonology needs (copd and bronchiectasis) once the ntm was successfully treated. I have been negative for MAC and also for Pseudomonas and klebsiella since last summer. I do have some fungi which appear now and then in my sputum but were not found during a bronchoscopy. My ntm expert told me I could stop the oral meds in June or maybe sooner and to stay on Arikayce as long as I can.
I have been having worsening digestive issues and mucus/breathing issues since November. Both seriously diminish my quality of life.
I stopped the oral meds and Arikayce around Christmas for a week. Because I take everything 3x per week, that means I missed two treatments. There was no improvement in my digestive issues. I have had a ab/pelvic ct scan and a pancreatic/liver/ducts, mri over the last few weeks for issues unrelated to my digestive problems and I am seeing my gastroenterologist in a few weeks. I don't believe the antibiotics are related to my problems and intend to continue them as long as my doctors say I should.
When I resumed the Arikayce I immediately noticed a difference. I had had an exacerbation when I first started it in July and it took a month to recover. My doctor told me to try 3x a week and that worked although I had increasing mucus and shortness of breath. In December, I realized that I was not doing activities that I had done before restarting Arikayce in August. Starting in November, I had a dogwalker for all 3 walks daily, which I had never needed before. I told myself that it was because of the winter weather but our temperature was in the 50's. I also was not working out. I haven't been to the building fitness center since September although I used to be there at least 3x per week. I purchased an exercise band in Nov which I've used twice. And, I have to force myself to go to my health club and I used to love going there. I'm at home most of the time!
I stopped Arikayce right after Christmas. When I had started Arikayce in August,I was unable to do Arikayce and saline and my doctor told me that the Arikayce was more important. I was taking it for pseudomonas and klebsiella then. I was negative for MAC and negative for the other two by September. Without Arikayce, I am able to do 3% saline 2x daily along with a smartvest and aerobika. I am walking the dog again but still have not been to the fc but go to my health club. The mucus and breathing are much, much better.
Thanks for listening and your advice. I will discuss all this with my doctor at the end of the month.
Rita (apologies for the long post)