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Just started big 3 for MAC: Questions about dosing and more
MAC & Bronchiectasis | Last Active: Feb 18, 2023 | Replies (51)Comment receiving replies
@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
Replies to "@janrn1 After a diagnosis of MAC is determined, there are more steps before treatment. First is..."
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!
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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.