Starting MAC treatment with "big three" drugs: What to expect?

I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.

Rita pearl

Cindy, this is truly a tough diagnosis to hear - all of us were overwhelmed at first, but also relieved to have a name for what was making us so sick.
So, you don't say what level of experience that your pulmonologist has with treating MAC, but it is a fairly rare disease, and many do not treat it frequently.

The standard protocol for treatment is the Big 3 three times each week for at least a year. There can be times, for example treating M.abscessus, when daily dosing happens from the start. I have a few questions.

Do you know which variety of NTM you have? Did the lung culture include colony count and antibiotic sensitivity testing? Is your pulmonologist working together with an infectious disease doc? Did you ask why you need the drugs daily?

If the answers are that the pulmo did not explain, I would seek answers there first, and if you don't get a good feeling, try Mayo or National Jewish Health in Denver or another lung center.

Because you are under treatment for RA, you need to confirm the compatibility with continued steroid and Levaquin use with the antibiotics. My daughter has been transitioned from steroids to a biologic plus Methotrexate to spare her lungs, which are scarred by lifelong asthma plus bronchiectasis (but no MAC)

Let me know what you have learned. After 9 months of treatment, I had to find a new pulmo who was willing tyto answer my questions and work with me, not dictate to me.

Sue

I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.

Rita pearl

Sue, thank you for your comments and important information. The steroids and Levaquin are for the Bronchiectasis. I imagine if I go on the Big 3 he would take me off the Levaquin. I take Simponi (biologic) IV every 8 weeks for my RA. I don't think the lung biopsy did a colony count nor a sensitivity. He is not working with an infectious disease specialist. My pulmonologist says he has treated others and that they've done well. And no I didn't ask why I would have to take daily. Thanks for the information. I may try and go to Mayo in Jacksonville.

I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.

I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.

Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/

A very little about my experience - When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.

Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue

Sue, will a trip to the beach make my MAC worse?
I had to stop taking the big 3 because of a bad reaction. I am asymptomatic, so am under observation by doctor—disease had not progressed after last x-ray.
What suggestions do you have for me?
Thank you—you always offer good info!

When you say "a trip to the beach", which do you mean?
The ocean & gulf beaches are not considered to carry much risk because the saline water is inhospitable to NTM/MAC.
That said, many of us in this group spend time on or near fresh water every year. I spend a lot of time paddle boarding & playing on Midwestern lakes all summer. I take the single precaution of keeping my face out of and away from the water. That means no tubing, diving, etc, but I look forward to pontoon boat rides and picnics on the shore. (Hard not to explore the underwater with my littles, so occasionally I will don a mask and snorkel for a quick look.)

I am sure there is some risk involved, but since NTM/MAC is everywhere - air, water & soil - it is impossible to be completely safe. I just stay conscious of high risks & take precautions - like masks when I garden, and keeping the soil moist to reduce particles in the air.

AND I definitely continue 7% saline nebs and airway clearance to make my lungs inhospitable to MAC. Written as I puff & cough!

What level of risk do you find to be acceptable? Have you asked your doctor about visiting the lake?
Sue