Newly diagnosed with MAC and Bronchiectasis. I have questions!

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

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.

I took mine 30 mins before bed. Started with the blue for 3 days. Added azithromycin for 3 days and then added the reds and was ok. Take them at night and sleep through feeling crappy.
I was prescribed zyploclone to help sleep. So miss a bunch of the side effects.
I eat a piece of toast when I take them.

Dear Loreofox80.
I am a 63 year old female and after putting it off for 4 years and 7 months (and I’m certain I had bronchiectasis and MAC for quite some time before diagnosis) I began the Big 3 yesterday. My doctor started me with the azithromycin. In two weeks, the ethambutal will be added and two weeks after that, rifampin. I have been definitely terrified of starting. My sister experienced vision problems after 17 months on the big three (from the ethambutal) so she stopped them all immediately. But my lungs have been seriously worsening the last five months so I am more than ready to begin tackling this aggressively.
All the best to you and I’m more than happy to answer any questions.

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!!!

Thank you @payette78 for posting and sharing your thoughts about the decisions you face. Like you, I am in my 70's and very recently diagnosed with BE and M. Abscessus which I found out last week is confirmed to be macrolide resistant.

I am being treated at UT Health in Tyler, TX and am grateful to live within a two hour drive of this facility which is a recognized member of the Bronchiectasis and NTM Care Center Network. It was a blessing to find a doctor and a facility that specializes in BE and NTM. They helped me get the tests and put together a treatment plan based on their expertise and my specific situation. It relieved a ton of my anxiety and eliminated most of the confusion and fear I felt at being adrift in a sea of disconnected specialists.

I've learned SO much in a short time from this Mayo Clinic Connect online forum It was here that I found out about the Bronchiectasis and NTM initiative https://www.bronchiectasisandntminitiative.org/ and the list put together by their steering committee to identify a national network of designated care centers.

I am currently doing twice daily airway clearance (7% saline, active breathing, Aerobika, huff, etc) but with the guidance of my doctors I have no *current* plans to begin a regimen of IV and oral antibiotics. The objective is to manage the BE and Abscessus to keep things from getting worse since BE is not reversible and my NTM infection is not likely to be something that could be eliminated.

I'm not far enough down the path to know how if this current approach to treatment will be enough. But, I feel better after 7 weeks than I did before I started the airway clearance therapy approach and my quality of life is good.

So again, thanks for your post and I wish you good luck, patience, and unflagging hope as you make your decisions about treatment.

Ed

I am a 72-year-old female with bronchiectasis and GERD, recently diagnosed with MAC. I am sitting here looking at the new prescription bottles (the Big 3) and really feeling anxious about doing this, actually not wanting to do it at all. I took a probiotic this morning and intend to try the azithromycin and see how it goes for a week, despite not tolerating antibiotics well. I do use a nebulizer with 3% saline followed by Afflovest twice a day. I am not very good at breathing exercises during the day but do try to use my Aerobika once in a while. I go to Silver Sneakers class for exercise 3 days a week but it has been a little more difficult lately with just being too tired. I joined a couple support groups and websites such as this. Some information is very good, some scary. Something we have to learn to cope with. I wish you luck on your journey.

Thank you @payette78 for posting and sharing your thoughts about the decisions you face. Like you, I am in my 70's and very recently diagnosed with BE and M. Abscessus which I found out last week is confirmed to be macrolide resistant.

I am being treated at UT Health in Tyler, TX and am grateful to live within a two hour drive of this facility which is a recognized member of the Bronchiectasis and NTM Care Center Network. It was a blessing to find a doctor and a facility that specializes in BE and NTM. They helped me get the tests and put together a treatment plan based on their expertise and my specific situation. It relieved a ton of my anxiety and eliminated most of the confusion and fear I felt at being adrift in a sea of disconnected specialists.

I've learned SO much in a short time from this Mayo Clinic Connect online forum It was here that I found out about the Bronchiectasis and NTM initiative https://www.bronchiectasisandntminitiative.org/ and the list put together by their steering committee to identify a national network of designated care centers.

I am currently doing twice daily airway clearance (7% saline, active breathing, Aerobika, huff, etc) but with the guidance of my doctors I have no *current* plans to begin a regimen of IV and oral antibiotics. The objective is to manage the BE and Abscessus to keep things from getting worse since BE is not reversible and my NTM infection is not likely to be something that could be eliminated.

I'm not far enough down the path to know how if this current approach to treatment will be enough. But, I feel better after 7 weeks than I did before I started the airway clearance therapy approach and my quality of life is good.

So again, thanks for your post and I wish you good luck, patience, and unflagging hope as you make your decisions about treatment.

Ed