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

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.

@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

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!

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!

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!

@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

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.

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

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