Newly diagnosed with MAC and Bronchiectasis. I have questions!

Hi
I am 77 years old and have BE and MAC. Tried antibiotics for MAC but only tolerated 7 weeks.
Now its watch and wait. Doing airway clearances daily amd trying to keep active.
Some people tolerate the drugs for 2 years. Even if you get a negative sputum, MAC can come back. Its slow growing.
Good luck with your decision
Marie

I am 64 yrs old and have been on the 3 antibiotics (Azithromycin, Ethambutol, Rifampin) daily for 11 months now. I am also doing Arikayce daily for the past 10 months. I have, fortunately, been able to tolerate all these antibiotics so far. Because I have the cavitary form with multiple cavities and nodules, wait and watch was not an option for me. You will find lots of support and information on this group so I am glad you found it. Just hearing about others experiences is helpful. I wish you the best!

Welcome to the group! I am 65 yr old female. Have had MAC at least 3 times. Now have MAC and Aspergillosis together. I have taken the big 3 daily. Keep in mind that everyone responds differently to medication. My worst side effects were nausea and fatigue. To reduce side affects pull. dr changed my RX schedule to 3 days a week of the big 3. Dr gave me Zofran RX for nausea. I was on this regimen for 18 months and 2 yrs. Doctors can adjust meds. Have never done airway clearance until this time around. The best isn’t working for me. Nebulizer with 7 % saline helps. I have been told MAC is slow growing also. But I have other lung problems and doctors recommend to treat. I hope you get helpful information from everyone’s posts on here. Please keep us updated. Best of luck to you. Praying for you.

78 years old with macrolide resistant mycobacterium abscessus. Going through a similar decision process. Only 3 drugs came out susceptible plus Tigecycline. Also have supraventricular tachycardia treated by Sotalol which makes QT prolonging drugs dangerous. That includes Zofran. Balancing risks of drugs versus risks of not treating. My most prevalent thinking is that if i don't at least try the drugs i will regret it. Waiting for the final treatment plan. Will post again when i decide. Best to you. This is hard!!!

Oh, thank you so much mariegrace! I a terrified of the side effects esp. vision and hearing loss. If you had any negative side effects that caused you to stop treatment (I assume you did!) did the side effects stop and make you whole again or partially whole. Thank you.

Hi
I had severe abdominal cramping and stomach pain and spent weekends in bed. I had to stop the 2 drugs after 7 weeks. It effected my gut but then it got better.
MG

I am trying to choose between just trying out the treatment and then abandoning it if it causes un bearable side effects or just going directly to the watchful waiting and learning all I can to help myself to keep the bacteria moving out of my lungs thus risking a much shorter lifespan. You are correct. Trying the treatment will at least eliminate regret. Thank you for reminding me of that. It is very difficult. I was diagnosed early April and I haven't even seen the pulmonologist yet. UCLA is a great medical center once you are in the system, but getting appointments to certain specialties is a waiting game. Have you been taught the airway clearance strategies and how to expectorate the mucus? And, how to breathe strategically? I have to laugh at my attempts at a buddha belly. I guess all in good time. Thank you again. Be well. Nancy

Dear mjb24, Thank you so much for your info. Your 3 drug regimen is what the ID doc would start me on. I am so happy for you that you are tolerating the cocktail. I read about Arikayce, but haven't researched it. I am in awe of your stamina! Do you do the airway clearance, and mucus expectorating. How about exercise? Walking, biking, gym ratting lifting weights? So much to learn. Diagnosed April 7 and wasn't able to get in to see the pulmonologist til June 10!
Sigh..... You have 7 months more to go. I wish you an easy time til it is over. Has your hearing or vision been adversely affected? Thank you so very much for your comments.

My pulmonologist ghosted me after referring me to the infectious disease doc so I have only an Aerobika for airway clearance. I may not be able to tolerate the treatment and from what i understand with my m abscessus subspecies abscessus the best i can hope for is containment. I have a devoted husband who is supportive of whatever i decide but i figure i owe it to us both to at least try the treatment. If you are as blindsided as i am by this i am truly sorry. I am new too and don't have any wisdom gained from experience to offer. There are lots of terrific and helpful people online here. Try some keyword searches. There is a ton of collective wisdom and empathy. All the best to you.

@loreofox80 Airway clearance is really important whether you choose to treat with antibiotics or not because this bacteria will hide out and thrive in the mucus. I nebulize 7% saline 2X day with the aerobika attached and that really works for me to get the mucus up and out. I also do autogenic drainage and huff coughing. It seems different methods work for different people. There is an abundance of information on this site, so you can try different approaches and see what works for you. For exercise, I bought a stationary bike with resistance bands. This is good for me because I am in Florida and can't take the heat. I'm so sorry you have to wait 3 months for an appointment with the pulmonologist. You are smart to use this time to read up on MAC and prepare for your 1st visit. Just don't dwell on any scary stuff you might read. Remember everyone is different and with good doctors they will guide you through this and make changes as needed based on your experience. Best wishes. Mary