Just started big 3 for MAC: Questions about dosing and more

Posted by bmiller57 @bmiller57, Apr 8, 2020

on my third dose of the big 3 what can i expect for common side effects and how long before i feel any better ???? and are all of you taking the 3 the same day how are you dosing ??

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@n4seth

It is my understanding from my infectious disease doc that MAC is chronic and progressive, but they wanted 3 consecutive positive samples prior to treating.

Jump to this post

@n4seth That sounds about right. irene5

REPLY
@sueinmn

@janrn1 After a diagnosis of MAC is determined, there are more steps before treatment. First is to determine the drug sensitivity - this takes more time in the lab - because a combination is required, and each strain of MAC may be susceptible (or resistant) to some of the typical drugs. Second is to assess the severity of the MAC infection - the regimen is long and difficult, and mild cases of MAC are often just monitored. That assessment is often done via CT imaging to see the extent of the infection in the lungs. Third is to determine whether other infections are present as well, because they must usually be treated first, through a completely different course of antibiotics. So, it sounds like your docs are doing everything according to the best practices protocols similar to those used by Mayo & National Jewish Health (NJH.)

You asked where pseudomonas comes from - it is another opportunistic pathogen, found pretty much everywhere, that usually only infects people with another underlying condition. For example, it often attacks the lungs of people with COPD, bronchiectasis or cystic fibrosis. It is treated with one or more two week courses of antibiotics, either oral or inhaled.

When I began my MAC journey, I was first treated for pseudomonas - first with oral levoquin for a month, and when that didn't work, with inhaled tobramycin for a month. That finally got rid of it. After that, I commenced 18 month of treatment for MAC, because the drugs couldn't be used at the same time. So it was almost 3 months from initial diagnosis of MAC until treatment of it started. It was over 2 years from the onset of my cough and fatigue until any diagnosis was made. I was repeatedly treated for asthma and bronchitis until a sharp-eyed radiologist spotted evidence of bronhiectasis on a chest x-ray and recommended more exploration.

Others in this group will probably tell you their stories, which vary widely based on their symptoms and other health conditions.

Sue

Jump to this post

I was in the ER two days ago because my SOB was so bad, and I had known for a while that I was in am exacerbation of my cold regardless of the MAC. The problem is no one wanted to help as far as my pulmonologist was concerned. The did a rule out PE via contrast CT scan which was negative. The ER Dr. said I was right about the exacerbation and started me on Prednisone and Augmentin. Also albuterol bullets,. I also am supposed to be using Budesimed through nebulizer which is new also but after treatment this morning I became increasingly short of breath. Can 15mg of Prednisone plus budesonide be too much? Oh boy, my pulmonologist wanted all these changes and not to treat anything including my exacerbation and the leaves town for a vacation and doesn't tell me he is leaving or who is covering for him. Also, I gave him 3 sputum samples that he asked immediately for. I drive them 40 miles up the road and there are no ordered tests for them. He was supposed to give those to the lab at UVA. What a mess.

REPLY

Hi! I have been following and have a few questions. I am getting ready to start the 3 antibiotics for MAC. My disease has started to progress on the CT scan. Does everyone get sick on these antibiotics?? Any other helpful advice or tips for things to do in your home to decrease the exposure to MAC? Also, does everyone need to do lung clearance and how is that done if so? Thank you!

REPLY
@masydnor

Hi! I have been following and have a few questions. I am getting ready to start the 3 antibiotics for MAC. My disease has started to progress on the CT scan. Does everyone get sick on these antibiotics?? Any other helpful advice or tips for things to do in your home to decrease the exposure to MAC? Also, does everyone need to do lung clearance and how is that done if so? Thank you!

Jump to this post

I was very nervous about starting the Big 3 but I have now been on them for 1 month and only had a little stomach upset for 1 day. I definitely spaced the meds apart so I could tolerate them better. I take Azithromycin and Ethambutol in the morning with breakfast. I then take Rifampin right before bed on an empty stomach. No problems so far. I took the advice of many in the group and got a LifeStraw Pitcher and LifeStraw Water Bottle along with the Bololo Baby bottle sterilizer for all my equipment (No more boiling it) and such a time saver. Everyone reacts differently to the meds and once you get on a schedule for everything much of the stress goes away.

REPLY
@masydnor

Hi! I have been following and have a few questions. I am getting ready to start the 3 antibiotics for MAC. My disease has started to progress on the CT scan. Does everyone get sick on these antibiotics?? Any other helpful advice or tips for things to do in your home to decrease the exposure to MAC? Also, does everyone need to do lung clearance and how is that done if so? Thank you!

Jump to this post

It is recommended that everyone does airway clearance at least once per day. We all differ in which techniques but exercise, diet and airway clearance are paramount.
I take all three of my meds at night which helps mitigate the side effects for me. Side effects differ for each of us. I will just say I'll be glad when I finish them but I feel bullet proof while I'm on them and they've done their job.
I hope all goes well for you.

REPLY
@masydnor

Hi! I have been following and have a few questions. I am getting ready to start the 3 antibiotics for MAC. My disease has started to progress on the CT scan. Does everyone get sick on these antibiotics?? Any other helpful advice or tips for things to do in your home to decrease the exposure to MAC? Also, does everyone need to do lung clearance and how is that done if so? Thank you!

Jump to this post

Welcome @masydnor. You're asking great questions. I see @tconz and @suethenanny have responded with helpful tips.

I moved your post to this existing discussion where others have offered their experiences.
- Just started big 3 for MAC: Questions about dosing and more: https://connect.mayoclinic.org/discussion/just-started-the-big-3-for-my-mac/

Here are some related links to answer parts of your other questions:
Does everyone get sick on these antibiotics??
Any other helpful advice or tips for things to do in your home to decrease the exposure to MAC?
Also, does everyone need to do lung clearance and how is that done if so?

- Questions for fellow members: Fireplace, whirlpool and other things https://connect.mayoclinic.org/discussion/questions-for-fellow-members/
– How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/
- Why do daily airway clearance? https://connect.mayoclinic.org/discussion/why-do-daily-airway-clearance/

REPLY
@sueinmn

@janrn1 After a diagnosis of MAC is determined, there are more steps before treatment. First is to determine the drug sensitivity - this takes more time in the lab - because a combination is required, and each strain of MAC may be susceptible (or resistant) to some of the typical drugs. Second is to assess the severity of the MAC infection - the regimen is long and difficult, and mild cases of MAC are often just monitored. That assessment is often done via CT imaging to see the extent of the infection in the lungs. Third is to determine whether other infections are present as well, because they must usually be treated first, through a completely different course of antibiotics. So, it sounds like your docs are doing everything according to the best practices protocols similar to those used by Mayo & National Jewish Health (NJH.)

You asked where pseudomonas comes from - it is another opportunistic pathogen, found pretty much everywhere, that usually only infects people with another underlying condition. For example, it often attacks the lungs of people with COPD, bronchiectasis or cystic fibrosis. It is treated with one or more two week courses of antibiotics, either oral or inhaled.

When I began my MAC journey, I was first treated for pseudomonas - first with oral levoquin for a month, and when that didn't work, with inhaled tobramycin for a month. That finally got rid of it. After that, I commenced 18 month of treatment for MAC, because the drugs couldn't be used at the same time. So it was almost 3 months from initial diagnosis of MAC until treatment of it started. It was over 2 years from the onset of my cough and fatigue until any diagnosis was made. I was repeatedly treated for asthma and bronchitis until a sharp-eyed radiologist spotted evidence of bronhiectasis on a chest x-ray and recommended more exploration.

Others in this group will probably tell you their stories, which vary widely based on their symptoms and other health conditions.

Sue

Jump to this post

Hello Sue,

I am new to this forum and are discovering so many useful information. I was recently confirmed of MAC (M. Avium complex) by a second bronchoscopy, though my CT scan in 2020 already suggested MAI. But my first bronchoscopy in 2020 didn't find anything. Without confirmed MAI, my PM had given me one-month of azithromycin, and another 3-month of azithr0mycin over the course of 2 years till my recent CT scan found new cavity nodules and he ordered a better bronchoscopy.

So I am starting the big 3-drug (Azithromycin, Ethambutol, Rifampin) antibiotic treatment now. But I read the latest MAC treatment guidance and they mentioned the macrolide susceptible test as you also mentioned in your post. I asked my doctor if I need that test but he said the microlab did not provide that. I am concerned because I had taken the single drug Azithromycin before and I actually finished the 3-month drug in 4 months. I am worried that my MAC has already developed drug resistant to Azithromycin so that my year-long treatment would be a waste. I am wondering if everyone on those 3-drug treatment has done the susceptible test. Thank you so much!

REPLY
@tconz

I was very nervous about starting the Big 3 but I have now been on them for 1 month and only had a little stomach upset for 1 day. I definitely spaced the meds apart so I could tolerate them better. I take Azithromycin and Ethambutol in the morning with breakfast. I then take Rifampin right before bed on an empty stomach. No problems so far. I took the advice of many in the group and got a LifeStraw Pitcher and LifeStraw Water Bottle along with the Bololo Baby bottle sterilizer for all my equipment (No more boiling it) and such a time saver. Everyone reacts differently to the meds and once you get on a schedule for everything much of the stress goes away.

Jump to this post

Tconz— were you told it’s okay to take Azithromyacin and Ethambutol with food? Somehow I thought or was told they all needed to be taken on an empty stomach.
Thanks

REPLY
@cate123456

Tconz— were you told it’s okay to take Azithromyacin and Ethambutol with food? Somehow I thought or was told they all needed to be taken on an empty stomach.
Thanks

Jump to this post

You can take both Azithromycin and Ethambutol with food if they are the tablets. I only have to take Rifampin on an empty stomach.

REPLY
@cate123456

Tconz— were you told it’s okay to take Azithromyacin and Ethambutol with food? Somehow I thought or was told they all needed to be taken on an empty stomach.
Thanks

Jump to this post

This is a common question.
Here is what I was told by my ID doc - ideally, medications taken on an empty stomach are absorbed more quickly and fully.
Realistically, many people experience problems with that. So what is most critical is to TAKE the medicines as scheduled.
For me personally, taking during the day, with or without food, was a NO GO due to nausea. So I took them at night before bed with a very small snack. My docs were okay with that, and I was able to take for over 18 months, including 6 months daily.
Sue

REPLY
Please sign in or register to post a reply.