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

I was diagnosed in January 2018. Still to this day - no improvement. I've had things get worse then get a little better but not much improvement of the initial damage done in my lungs. I'm now on the inhaled Amikacin along with the big 3 still. Hopefully it will help.

@windwalker Terri, you've said it took you 12 months to seroconvert when you recovered from your illness. And I know it has taken a while for others too.
I just had my scans after the first 6 months of treatment with the Big 3.
I didn't expect to have seroconverted yet, but I kind of expected some improvement. It was a real shock to find out from the pulmonologists there's been no improvement at all.
I've fully complied with the treatment, but it hasn't reduced the amount of nodules and granulomas in my lungs. M. Intracellulare is tough to get rid of because it's mostly in a biofilm state, but I was hoping for a little improvement.
Did many of you show at least some improvement after 6 months? Or did it take much longer? Did anyone with no improvement at 6 months, later go on to recover?
What did you find to help you stay positive and keep waiting for improvement?
I really appreciate all your help and kindness.

@anniepie Sorry to hear that but it can be quite typical, I was the same, it took Inhaled Amikacin to knock mine.

Heathery. So glad that amikacin helped you so much. Was it expensive. My pulmonary doc wants me to start on it. I have had Mac for 4 years and bronchiectasis as well. He said 2 weeks on and 2 weeks off etc. how often did you take it?

Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!

Heathert. I sent a reply to you but the auto correct sent it to heathery 3 times!!!! Lol. I just wondered how long and how often you took the amikacin? My doc wants me to start on it. Was it expensive??

Hi Deb. On my 3rd month of Ethambutol and azithromycin. Doing better than I thought I would. Had pneumonia last week so that d@mpened my spirits. Looking good now and will take a c t scan in 2 weeks and then my Dr (infectious disease) will see if he has to put me on Rifabutin. He is very hesitant and wants the best for me but I will know what the scan shows. Here’s hoping it looks okay🤔*

@sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.

@sounder27 I just thought I would chime in on the Arikayce. I have been on it since January 16. Interesting that your doc says one week on, one off. I am recommended daily, but when I lost my voice my doc cut it back to 3 times per week. That has really been my only side effect. I am back to taking it daily, as that is what is recommended by the drug company. It is very expensive, but they provided me a copay card. I pay nothing for it.