1. < MAC & Bronchiectasis

Asymptomatic MAC

Posted by circleup @circleup, May 21 8:15am

I was accidentally diagnosed with MAC, while pursuing another diagnosis. I do have nodular lung disease. I am completely asymptomatic, no fever, no cough, no sputum. . . . .just fatigue. Have had bronchoscopy, cultures and smears to confirm the MAC diagnosis. I feel fine. The want to start me on the BIG three. The ID is not very forthcoming with patient education. I am afraid of the side effects of these drugs. Plus Alikares was discussed. I do have long history of lung problems, colds/flu/ asthma/ bronchititis/ pleurisy/ pnuemonia ever since early teens, (now 67) My blood chemistry doesnt even show i have an infection. I dont want to take medication to get myself sick with side effects. The ID has already written the scripts for the Zithromax and rifampin and wants me to take it twice daily for 12 months, never mentioned monitoring. I feel fine, i dont know what to do. . . .but i guess feeling fine isnt the issue, lol.

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suzyqueue | @suzyqueue | Sep 5 7:30am
In reply to @kdiago1564 "I am 46 and have MAC/MAI. My doctor at NYU said given that I am a..." + (show)
@kdiago1564

I am 46 and have MAC/MAI. My doctor at NYU said given that I am a relatively young and otherwise healthy, she would want to treat my MAC infection aggressively and get me in the Encore trial (I go back in to discuss the treatment plan this month).

As a second opinion, I asked the same question of Dr. Chuck Daly at NJH during his recent webinar on NTM Mycobacteria—whether he would opt to treat someone of my age aggressively and he said he would simply because it would hopefully wipe the slate clean with the goal of avoiding additional infections which could set me up for worsening symptoms and bronchiectasis.

I am on the fence too because of the potential for side effects from the medications and I have been very consistent with my Airway clearance, but their reasoning also makes sense and I trust it. Will see how it goes when I go for follow up this month.

Dr. Chuck Daly's webinar: https://youtu.be/5cgFoQ0aDAc?si=yhb8SkB3CShk-0W1
Encore trial: https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/?section=elg

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The side effects are nothing compared to what MAC can do as far as damage goes....in my opinion. This disease has its own evil mind. Some say its slow growing but in many cases it isn't. I would get ahead of it as far as I could. I had a 10 cm cavity grown in my upper left lobe within 30 days while "being on the fence" and waiting to start treatment. Now I can't get rid of it or the MAC. Finally going on inhaled Ariakace is what shrunk it to 4 cm but that's the only improvement. You can always stop the treatment. But you can't always reverse the damage.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 5 10:57am
In reply to @kdiago1564 "I am 46 and have MAC/MAI. My doctor at NYU said given that I am a..." + (show)
@kdiago1564

I am 46 and have MAC/MAI. My doctor at NYU said given that I am a relatively young and otherwise healthy, she would want to treat my MAC infection aggressively and get me in the Encore trial (I go back in to discuss the treatment plan this month).

As a second opinion, I asked the same question of Dr. Chuck Daly at NJH during his recent webinar on NTM Mycobacteria—whether he would opt to treat someone of my age aggressively and he said he would simply because it would hopefully wipe the slate clean with the goal of avoiding additional infections which could set me up for worsening symptoms and bronchiectasis.

I am on the fence too because of the potential for side effects from the medications and I have been very consistent with my Airway clearance, but their reasoning also makes sense and I trust it. Will see how it goes when I go for follow up this month.

Dr. Chuck Daly's webinar: https://youtu.be/5cgFoQ0aDAc?si=yhb8SkB3CShk-0W1
Encore trial: https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/?section=elg

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If you can get into the clinical trial, that would be great. I agree with treating while young -because your whole system is stronger, BUT "watch and wait" is a valid treatment method for asymptomatic MAC, little or no lung damage, NTM related or otherwise. This is not really "not treating" but treating conservatively first.

That is, IF you can commit to a daily airway clearance routine for 6 months. You may be able to beat this without antibiotic therapy. If not, or if things get worse before 6 months, you can always start antibiotics.

Why do I think this? Risks of side effects from the antibiotic therapy are not insignificant, no matter your age. And because we are learning that if you need a "second round" of therapy in a few years, you are at much higher risk of adverse reaction to two of the drugs - Rifampin and Ethambutol. Finally, we are in very hopeful stage right now, with a number of new therapies on the horizon, which will hopefully not require 18-24 month of 3 antibiotics.

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1 reply
kdiago1564 | @kdiago1564 | Sep 5 11:26am
In reply to @sueinmn "If you can get into the clinical trial, that would be great. I agree with treating..." + (show)
@sueinmn

If you can get into the clinical trial, that would be great. I agree with treating while young -because your whole system is stronger, BUT "watch and wait" is a valid treatment method for asymptomatic MAC, little or no lung damage, NTM related or otherwise. This is not really "not treating" but treating conservatively first.

That is, IF you can commit to a daily airway clearance routine for 6 months. You may be able to beat this without antibiotic therapy. If not, or if things get worse before 6 months, you can always start antibiotics.

Why do I think this? Risks of side effects from the antibiotic therapy are not insignificant, no matter your age. And because we are learning that if you need a "second round" of therapy in a few years, you are at much higher risk of adverse reaction to two of the drugs - Rifampin and Ethambutol. Finally, we are in very hopeful stage right now, with a number of new therapies on the horizon, which will hopefully not require 18-24 month of 3 antibiotics.

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Thank you! @sueinmn,

Your perspective on this is really helpful. I was curious about how successive rounds of antibiotics might affect me and how effective or ineffective they might become if one has to repeat for whatever infections might take hold (which seems like a probable outcome with this thing).

I can commit (and have been at least for the past three months now) Airway clearance with 2x a day nebulizer and Aerobika but I still do cough up stuff—sometimes small yellow bits so might just make sense to get treated. I met with the GI doc today and will have the PH test done with next month so fingers crossed that GERD isn't another factor to consider.

All a bit confounding but will mull it over with my doctor but leaning towards being treated now in hopes that I can mostly ward off anything serious with consistent airway clearance. Also trying to balance out how many CTs I have since I have many years ahead on this journey and don't want to get constant radiation even low-dose.

Thank you again!
Kate

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imatcha33 | @imatcha33 | Oct 14 6:24pm
In reply to @aliveandwell "I was recently diagnosed with MAC and bronchiectasis. I am being treated by an infectious disease..." + (show)
@aliveandwell

I was recently diagnosed with MAC and bronchiectasis. I am being treated by an infectious disease Dr. At a teaching hospital in Portland Or. OREGON HEALTH SCIENCE UNIVERSITY
I'm in a clinical trial. Like most of you I was so apprehensive about starting this long treatment of a year or two. My breathing was getting worse by the day so I truly had no choice. I take only 2 drugs Azithrymicin and Ethambutol.
3 days a week at night with ice cream.. yes.... that IS EVEN ON RX!! LOL
NO SIDE EFFECTS and great results. In 2nd week my breathing improved 50%....I still Have bit of a cough & fatigue but now in 4 th week that's even better. I exercise daily, walking and strength training and I get lots of rest . Use nebulizer And the flutter. I'm so excited to feel so improved..I truly thought I was headed down hill fast. I was not my self at all.
My team of Dr's are amazing... my best advice is to be proactive.... well read about your lung disease.. and a part of your team.
This is all coupled with autoimmune hepatitis so my liver and lungs fight one another. My immune system is so compromised that I get bacteria in my lungs easily.
I've been depressed but, found freedom in exercise... and dancing put a smile on my face.
My treatment working so fast gave me HOPE!

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Hi @aliveandwell I'm curious about your doc @OHSU. I live in Portland from November through March and then am in Maine the rest of the year. I have a doc in the ID Department @OHSU. I saw him in person 1 time...have had 1 video conference and my next appointment will be by phone. I feel frustrated since he has not asked me to have a follow-up CT. I don't feel bad but would really like to know what is going on in my lungs. I am not willing to start the treatment unless my quality of life becomes compromised. I feel tired a lot, I cough some but it's unproductive. If I get a cold it goes right to my lungs. I have fatigue but it's manageable.

I'm so happy that you are feeling better and are happy with your doctor. Does he actually see you (in person)? Have you met Dr. Strnad @OHSU? He came highly recommended and studied with Dr. Hurtado (a legend at MGH). I saw Dr. Hurtado and loved her but Boston is pretty far away for me in the event of any emergency and she is booked out a year in advance! I welcome your thoughts.

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