Life while being treated

I have only been on the meds since dec 2024 but take them daily. I was very nervous to begin treatment but so far i have been symptom free! I am on the young side (49) with 2 teenagers and a full time, demanding job. I have not skipped a beat and feel fine!! I wish you all the best as you move forward.

Thank you! The regimen suggested to me is 3 different drugs, 3 times per week for 6 months after testing negative for MAC. Is that similar to your protocol?

I am on 3 meds every day because i have a cavitary nodule. I havent been given a timeline. I believe my sputum samples have to test negative 3x and then stay on the meds for up to one year after that. It is a lengthy process.

Good luck to you!

Hi, I have also been on meds x 3 trice weekly since Jan 25 after remaining treatment free for 8 years. I too was worried about the treatment. I know others who have no side effects from treatment but unfortunately, we are all different. I had to stop ethambutol because of peripheral neuropathy. Put on Clofazimine in its place. I get an upset stomach after taking this and have other side effects that I make note of to run by doctors at next meeting. I stay home on treatment days and do what I can on the off days. I’m overly tired on the big 3.
I have heard many of us do have reinfection after treatment. I am hoping this will not be the case. I doubt I’ll do drugs a second time. Just remember, everyone is different, be brave, take the next Step just report any unusual symptoms immediately. I’m told after negative sputum likely in 6 months another 12 months of treatment. Good luck 🤞

I have MAC and BE , been on the ‘big three ‘ for 10 months now , sputum was negative after 6 months on drugs . I have CT next month depending on the results, my pulmonologist might discontinue the 3 meds , and he’ll start me on Amikacin nebulize for 6 months. He said MAC might come back, so I just hope for the best. He also ordered Trelegy , he said for a year. I was kind of hesitant to start it , but I did ,it helped my coughing and shortness of breath and gave me more energy to do some housework. We’re all different. You’re all in my prayers, don’t lose hope God is good all the time ! 🙏🙏🙏

Thank for your reply. How have you felt while taking the 3 meds? Side-effects? Did you start feeling better as they worked? My PFTs never show any response to inhaler meds. If I didn't cough I'm not sure I'd know I have this infection; CT scan show worsening.

I was losing weight and occasional loose stool’s , poor appetite , , gets tired easily , so I’ve been taking protein drinks, now weight is stable, appetite improving after starting the Trelegy , I have more energy, hopefully my CT scan scheduled next month will be good, so I can stop the 3 meds and start nebulizing Amikacin for 6 months ,. We just hope for the best. Hope you feel better.

Interesting that you say you would not go on the big 3 for a second time. My NTM - MAC has returned after a year of stopping treatment. I lost so much weight and felt awful. I managed to work full time as a teacher for 8 months out of my 14 month treatment. I was determined to finish my treatment I am usually a very determined person. This time I am not so sure. I do not feel as ill as I did when diagnosed with MAC first time round. Has anyone decided not to have treatment. As you say everyone is different but I felt awful everyday when on the big 3. I know a lot more now and have done a lot of research. It took me about 8 months to feel anyway normal again. I have underlying bronchiectasis. I cough a lot most days and have had a few flare ups. I was given amoxocillin but was violently ill - I was always able to tolerate these before when I had a chest infection years ago. Would love to hear how other people have managed.

I must have been born under a lucky star. Like you, the antibiotics made me feel awful, and actually were stopped before I was negative due to the side effects. But I kept up rigorous airway clearance with 7% saline after stopping, and my lungs actually continued to clear the infection.
Under my pulmonologist, I have gradually been able to "dial back" my airway clearance to once a day, use my asthma meds religiously, and only use 7% saline plus nebs during exacerbations.
Did you maintain your airway clearance routine after stopping the meds?