MAC infection treatment

I have 2 appointments coming up before I restart treatment at the beginning of April. I think the rifanpicin caused the worst side effects. Thank you for replying. I feel more prepared this time and I will be more informed too!

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Ooh, I hope to get over this someday "I fully expect to have a reoccurrence of MAC in the future. I just hope I get a decent break off the meds before it returns." I have been off the meds for over 5 years, and the thought is still with me. But I continue asthma meds, airway clearance, exercise, healthy living and staying positive.
No sometimes whole days go by when I forget about my BE, but every cold or unusual cough gets me worrying. Now well past 70, I am not sure if I would resume meds, or just ramp up my avoidance efforts. Of course, with Arikayce now in the arsenal, maybe treatment would be better the second time around.
Hang in there, and be positive!

That is interesting. I had to take the 3 antibiotics every day. I tested positive after 4 months of treatment then had to continue for a year after that. I was very ill before I started treatment in December 2022. I feel much better this time and was quite shocked to learn that the NTM was back. America is way ahead of the UK with its treatment. Thank you for your support. I need lots of prayers! We eat early too and my bedtime is 10pm. I do not want to be off work this time.

Hi there, can I ask which drug was irritating the bladder and what the symptoms were (urinary incontinence)? I have had this problem since starting the big 3 a month ago. I hope this drug regime works because I don’t fancy another round or 2 after the initial 18 months. Can anyone enlighten me on when the MAC returns is it still slow growing or does it come back with its army reformed and does it attack quicker on return? Cheers

As far as I know it was the rifanpicin. I now take tablets for bladder irritation. I did not get to the incontinence stage just urgency. MAC is slow growing. I am shocked that it has returned a year later as I feel okay. The big 3 is tough going but it was worth it to get back to some sort of normality. Good luck

I personally had an issue with Rifampin. LOL, but it was the number one drug that would penetrate the cell wall of the mycobacterium. So i had to take it! I believe i had a reaction to the drug. My issue was constant chest pain. Nobody listened to me but no one could tell me if the chest pain was from the MAC or something else. Finally, had an event and went to the ER! The rifampin was interfering with my blood pressure meds and it was going thru the roof. I was kept for cardiac observation and every test run that was possible. LOL. My meds were changed and a higher dosage. Chest pain is gone now! WHEW! It was exhausting! But getting off the rifampin was never a consideration.

Just goes to show every one of us reacts differently. I too had a rifampin-sensitive strain and needed to stay on it. But rifampin made my asthma worse - go figure.

Are you very ill? If your symptoms are moderate did your doctor consider the option of daily airway clearance and reducing MAC exposure rather than going back on antibiotics?

I read an article that stem cell therapy for BE is being studied in China. So far, 2 people were experimentally treated and cured. If memory serves me right, the physicians took stem cells from the patients' lungs and manipulated the cells and returned to lungs. This was done via a scope, so not too invasive. It was a while ago when I read the article, but you may be able to find it via google. So, who knows-there may be hope for us-someday.

More on stem cell research. Sorry. I could not download and upload this but you can google the following: The research done in China was published in"Journal of Protein and Cell". Title is: "Regenerated functional alveoli by adult human SOX9? airway basal cell transplantation". Previous mice study with BE recovered lost respiratory function. 2 human patients showed continuous improvement. Maybe not "cured" but researchers did imply cure after 5 years. Also mentioned that the research team has already performed 80 stem cell transplants in patients with COPD. Interstitial lung disease, BE, and other lung diseases. That's very interesting!