What happens if you don't become negative with therapy?

It is not uncommon to stay on the big 3 for longer periods. I did 28 months, a 6 month break and 12 more months myself. You have improvement, that's good, stay with it.

SAme here. . . .took the big three for over a year and no changes in the status on my xrays or CT scan. I am 69 and asymptomatic. I am worried to. . . .i have a long childhood and adult history of pulmonary issues. My lungs are already battle scarred. I want to stop the meds. No one will answer me, what the consequences will be if i stop the meds and just do active yearly surveilance with pulmonary. Apparentaly not all doctors have experience with MAC. I have no cough, no sputum to culture. But i do have fatique from it. So i am floundering and on my own i guess to advocate for myself. This site has been the most helpful and gives me advice, as to what questions to ask my doctors.

If your docs haven't mentioned inhaled Arikayce ask them... It's approved for folks who have "failed" 6 months of the antibiotics. It's very effective, faster, for more people . It's expected to be approved for all soon. It also has side effects to watch for.

@mary80 and @circleup Here is a different report from Rick's @rstel7272.rstel7272 My diagnosis is bronchiectasis, asthma, vocal chord dysfunction, a few stable nodules and mild interstitial lung disease (noted by radiologist as probable scarring.)

Over 5 years ago, after over 18 months on medications, my cultures (2 of 3) were still positive, and my CT scan had improved. (Arikayce was still in clinical testing and I did not qualify.) However, taking the Big 3 3 times weekly for a year, then daily for over 6 months was totally trashing my body & health - I had lost over 20% of my body weight, and the fatigue and body aches were crushing. About that time, we were really beginning to understand the benefits of 7% saline nebs with airway clearance. So I sat down with my ID Doc, told him what I was going through, and we decided I should stop the meds and continue the saline & airway clearance. The pulmonologist and especially my PCP concurred.

Fast forward to late 2022. Still doing saline & airway clearance once a day. Stable CT, no sputum to test, my symptoms except shortness of breath minimal. Living on my levalbuterol inhaler. We added a new inhaler (Symbicort) that controlled my asthma and took care of the SOB. After about sixth months I gradually reduced saline nebs to 2-3 times per week, but continued airway clearance.

On to October 2024 - Still a stable CT, still no sputum, and permission to stop routine saline nebs to see if it makes a difference (still doing airway clearance with exercise and/or PEP. ) We drafted a complete "Exacerbation Plan" - which nebs to add & when, double up airway clearance, have prednisone on hand and when to use, have a scrip for antibiotic & when to use (after I call in, but don't wait for a call back.) So far 🤞 I haven't needed it.

So, will my infection flare up some day? Probably, but so far I have made it through the Covid pandemic, 2 exacerbations in 5 years, 2 surgeries (unrelated to lungs), caring for little grandkids (on sick days too) and a case of Covid. In addition to travelling, gardening and just living. I am actually heathier now than 8 years ago, when I was living with constant asthma attacks interspersed with bouts of bronchitis, pneumonia and OH, the coughing.

Do you have a good doc you trust? To me, that is the biggest element. Then you can put your own wellness plan in place and breathe.

What an uplifting report from your experience! I am sure that it will give hope and guidance for others who have not had complete success on meds to know that there is still a way to manage this disease. You are correct by emphasizing good communication with a good doctor patient relationship.

My first symptoms of mac/bronchiectasis appeared when I was 37, I had had no previous pulmonary issues. My children were aged 4 and 1 at the time, I can relate to your situation! It was two and half years before I got diagnosed and started the big three but the infection didn't clear with the treatment. I was in the aricayce trial but stopped it early because of hearing loss.
What's helped me (improved my symptoms) has been exercise,nebulized saline, and postural drainage. They helped me cough up plugs which I couldn't do without these airway clearance techniques.
I'll be 54 next month. I haven't been on the big 3 for the last 6 years. Before that I was on and off them. My catacans are mostly stable. I had the right middle lobe removed, which was the most damaged part of my lungs, I'm not sure how much of an impact this has had on my situation. For now at least, I'm doing okay and I feel good. I hope this is helpful to you

Where I live it’s not simple to obtain arikayce. They will give me amikacin for iv nebulized. I hope it is equally effective

That’s very helpful, thank you. Your situation is very similar , I discovered MAC last year , with 2 children aged 2 and a newborn, so I was really shocked. I also have a middle lobe (in addition to lingula) that is very damaged and we are discussing about surgery… I’m not so convinced of Surgery because I fear complications, but it’s an option. i’m going to try nebulized amikacin (not arikayce) but I’m afraid of hearing issues too.. I don't know if I will ever get rid of Mac… Thanks again for your testimony.

Thank you very much for your testimony Sue, it is comforting to know that the alternative to non -negativeization is not an end of life sentence.

I’m probably repeating what some others have said but I had a couple of thoughts about your post. You say your CT is showing improvement but you are still positive for Mac. Has the amount of bacteria in your sputum samples (AFB) changed? They can go as high as 4+ and as low as “few” before being negative for Mac. It might give you some hope if your bacterial count is going down.

I was on the Big 3 for 6 months before getting side effects and going off of them altogether. Besides the side effects, my bacterial count was higher after 6 months than it was when I started the Big 3 and this particular drug combination is not an option for me now.

I’ve been nebulizing twice a day for nearly 6 years now and my CTs still fluctuate a bit and my AFB also fluctuates from no Mac to 2+. I haven’t started taking medications for Mac again. Although I have had some fluctuations in health and I’m more vulnerable to catching respiratory illnesses, I feel quite well and I’ve learned to carry on with life. I believe there are more people than just me out there who are living with Mac and leading pretty normal and productive lives.

Finally, even if the Big 3 on their own don’t work for you, there are other options for drugs to take with or instead of the Big 3 together. There are also drugs in development that target Mac and other NTMs and they will hopefully be available to us before too long - so this gives us some hope regarding better treatment options for this disease.

I wish you well and encourage you to be an advocate for yourself so that you get the best and most personalized treatment that is available for you.