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 ??

@bmiller57

i honestly dont know how long ive had mac i am a heavy smoker so i just figured the cough was from that my primary doc thought i had pneumonia sent for xray didnt like what he seen sent for ct scan then off to ER was admitted they did many blod tests and a ct with contrast tht showed a large cavatery lesion in my left lung more testing finaly diagnosed with mac this all took place end of feb. as far as symptoms i have shortness of breath that set in when i had the pneamonia hasnt let up discomfort in chest dull aches and dizziness

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I was just diagnosed and my Dr.s are saying they don't want to treat it at this point. They are still testing my sputum samples but not sure for what? It took 3 weeks for the sputum to grow when the MAC diagnosis came. They getting ready to test for other growth through new samples, one being Pseudomonas. How do you treat that, and how do you get it?

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@janrn1

I was just diagnosed and my Dr.s are saying they don't want to treat it at this point. They are still testing my sputum samples but not sure for what? It took 3 weeks for the sputum to grow when the MAC diagnosis came. They getting ready to test for other growth through new samples, one being Pseudomonas. How do you treat that, and how do you get it?

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I forgot to say thank you!

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@janrn1

I forgot to say thank you!

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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.

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@janrn1

I was just diagnosed and my Dr.s are saying they don't want to treat it at this point. They are still testing my sputum samples but not sure for what? It took 3 weeks for the sputum to grow when the MAC diagnosis came. They getting ready to test for other growth through new samples, one being Pseudomonas. How do you treat that, and how do you get it?

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@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

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@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.

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@n4seth That sounds about right. irene5

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@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

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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.

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