(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

What meds is everyone taking?

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I had a pet scan that showed a nodule on my lung and a lymph node that sort of lighted up. I can have a biopsy on the node or wat h it for 3 months then a cat scan. I had no symptoms at all. They found this when I had pnemonia 2 months ago. What should I do

@garry When I was taking the antibiotics, it was azithromycin, rifampin & ethambutol. At first it was 3X/wk, but my lungs actually continued to get worse (though my cough improved) and the ID doc increased it to daily for 6 months. Lungs cleared of MAC spots and I am now on a daily maintenance regimen of 7% saline nebs with airway clearance device (Aerobika) plus the asthma meds montelukast (singulair) and Flovent. We shall see in April if it is working. Sue

Thank you for that info . I never heard of the saline so i got bottle of =
9% across the counter. I put it in my nebulizer. I see the dr on wed so =
I will ask for the 7%. I was asked for a sputum sample but i was not =
able to bring anything up. I never saw the point because I am on =
antibiotic's. Is it not suppose to kill the mac so how can there be a =
reading??

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Hi Garry, did you get 9% or .9%? Tricky little decimal point! Point 9% is the normal amount of saline we have in our bodies and won't do much as far as causing your lungs to cough up sputum. 7% has seven times as much saline and comes in 4ml vials. I thought that 7% requires a prescription but someone recently said that you can get it in Amazon without a prescription.

The sputum sample will show if the antibiotics you are taking are working to kill your particular lung bacteria. They don't work for everybody and when they do work it some times takes a while before there is progress.

Bummer! I guess what you decide to do depends on your personality. The doctors saw something when you had pneumonia and ordered the pet scan to see if it's cancer. Apparently the results of the scan are inconclusive. So, are you the type of person who can put the worry aside and go on with your life for three months while waiting to get the ct scsn? Or, are you someone who wants to know NOW? A biopsy will give you the answer regarding whether the nodule is cancerous or not now. Up to you.

Good luck whatever you choose to do.

@garry @rits Good Catch Rits! Sounds like .09 saline for injection (lactated ringer bags) and Not for respiratory inhalation. (not sure it would hurt but wouldn't nebulize it if I were you. ) Most all sterile solutions for inhalation are in the tiny premeasured ML pipets....They do not come in a bag. Garry...I would not use that and wait to get a script. Kate

@garry I'm with Rita - if you got it locally without a scrip, you have.9% - if you want to kill MAC you need 7%. Current research shows 3% is not enough, even though it may be enough to bring up mucus - which is fine if you don't have MAC
As for the sputum sample, how was your MAC diagnosed?
First, a sputum culture is necessary to confirm MAC versus another infectious agent, and takes anywhere from 4-8 weeks to grow. When first diagnosed, there was so much MAC in my sputum that it was confirmed in 4 weeks, now it's still there but takes about 7 weeks to show. Second, the culture needs to be subjected to sensitivity testing to be sure the right drugs are being used. My docs use the state dept of health lab for the culture and National Jewish Health lab in Colorado for the sensitivity testing.
In my case, after the initial round of antibiotics, I wasn't producing much mucus, so I would neb with 10% saline to bring up sputum - believe me, it irritated mightily and got me coughing stuff up in minutes.
The point of sputum testing, in addition to initial diagnosis, is to determine how long to treat with antibiotics. Depending on the severity of bronchiectasis, and your other symptoms, typical treatment is 6-12 months after sputum no longer shows MAC. My case was a little different. After 18 months lung CT was clear and cough was rare and produced clear sputum, but MAC was still present. The long term antibiotics were taking a toll on body and life, so the doc stopped them, and I'm using 7% saline, hoping it will eradicate the bacteria, or at least keep more from growing.
I would never have known the questions to ask, or what to expect, without the support of this group. Here's hoping you get good results from your visit tomorrow.
Sue

Please, please tell me how I can get to the most recent posts without going through all of the prior from 2011 and on? I spent a half hour trying to get through them and then lost the whole thing. I would like to get the comments from 2018 and forward to get the lastest information on MAC and bronchiectasis which I have been diagnosed with. My Dr wants to go on the 3 drug plan for 18 months and I would like updated information on the subject of results of those who have tried it and perhaps other treatment possibilities.
Thanks. Would really be appreciated.
Sharon D

There should be a box on the right side of your screen that says oldest to newest...and I think there is an arrow that if you click on, it says newest to oldest, that will bring up the newest posts instead of the oldest ones first.