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Posts (19)

Dec 22, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@xfirerose Hi. If you were referred to UCLA you can't be too far from me. I live in Redondo Beach. I've been on the Big 3 since September. For about the first month and a half I had terrible stomach cramps and various forms of repeated urgent bowel movements starting about one to two hours after taking the meds and lasting for several hours. I felt afraid to try to go anywhere on "medicine days." Gradually my body seems to have become more accustomed to the drugs. I still have occasional diarrhea bouts but they are usually single bouts, not repeated. I tried different strategies at first — taking the meds with a meal that included rice, taking digestive enzymes, trying an array of time schedules. After 3 months, I would say it has been just a matter of my body getting used to the drugs. When I asked my I D doc for suggested remedies for the stomach issues, he said most patients just figure out what works fir them because everybody's different. I know it may not help, but I think he was right. You just have to find what works for you. I hope you find your way and the drugs help. Olivia

Dec 15, 2018 · Long-term Antibiotics for Bronchiectasis & MAC in MAC & Bronchiectasis

@margiebanks and @windwalker Thank you for your prompt, thoughtful and caring responses. You speak from experience and heart. I've tried to protect myself at the hospital, but I was the only one in the area who could be with my husband. I just didn't feel I could not be with him. I hope I don't have to pay a big price. The observation that my immune system seems to be struggling is right on. I know I'm exhausted and I know my lung condition reduces my resilience. It helps to hear your voices of wisdom. I pray for wisdom during a challenging time.

Dec 15, 2018 · Long-term Antibiotics for Bronchiectasis & MAC in MAC & Bronchiectasis

Help! It's Saturday (of course) and I had chills last night for about an hour starting at bedtime. They subsided eventually and I was able to sleep. I've been on "the Big 3" since September 10. What do you think is going on? Could the chills be a symptom of lung infection from the MAC even though I'm on the meds? If so, what's the treatment? Should I bother to see an urgent care doc today? If so, what could they do for me? To make matters more complicated, my husband is in the hospital today because of a bad fall he took on Monday. He'll have surgery on Tuesday. Should I go to the hospital to see him if I feel well enough or should I stay home? Olivia


@brigby To answer your questions, I didn't start with IV antibiotics. By the time my condition worsened (spring 2017, after living with bronchiectasis diagnosis since 1997 and NTM diagnosis since 2008) I was retired from full-time work. I still work part-time and I've been working around the Monday, Wednesday, Friday doses of the 3 antibiotics. On those days I like to stay home in the afternoons to be close to my own bathroom and be able to rest if I need to rest. But I have to say those days are getting easier as time goes on.


@aoise I'm writing to encourage you to consider the treatment if it's being recommended for you. I was adamantly opposed to taking the treatment because my former pulmonologist had frightened me, told me "the treatment is worse than the disease." But then my condition worsened and I developed cavities in my lungs. Now I'm sorry I didn't begin the treatment sooner because it could possibly have reduced the amount of damage caused by the NTM infection. I've been on the treatment (azithromycin, ethambutol, and rifampin) for two months. It's not fun but it's doable and I can see that it's reducing signs of infection. I would encourage you to try to think beyond your current circumstances and make every effort to limit further damage. Best wishes! Olivia in California


@margiebanks Hi Margie, I'm sorry you've been working with a doctor who hasn't worked with you on the preventive side (which can make a big difference!). I can only give you my experience. My doctors over the last 20 years of bronchiectasis and MAC have urged me to have the pneumonia vaccine and the annual flu shot.

Oct 29, 2018 · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

@windwalker I'm doing ok. The first couple of weeks I had stomach cramps and frequent trips to the potty (felt I couldn't leave the house for at least 4 hours after the dose). Now things are more comfortable. Seems my body has pretty much adjusted, although I still want a potty nearby after I take the meds. I feel more able to manage the side effects. Appetite is holding but diminished, so I try to eat high calorie but nutritious food. Phlegm is noticeably reduced, so the nebulizer saline doesn't bring up much at all but assures me that the meds are working. I was pretty excited about the good results until I coughed up blood. That incident really discouraged me, but I'm ok now.

Oct 28, 2018 · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the ID doc. The pulmonologist didn't think it was anything to be alarmed about (unless I was coughing up blood repeatedly. That wasn't the case. It resolved itself in one day. I got a message to the ID doc but didn't get to speak with him. I know the two docs talk to each other. They did not call off the meds.