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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: Jun 16, 2023 | Replies (184)Comment receiving replies
Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/
A very little about my experience - When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.
Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue
Replies to "Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the..."
Sue, i havent started the big 3 yet but mine would be 7 pills- all at once? I already have chronic nausea due to gastroparesis
Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper left lobectomy in June, mostly because they thought the infection was cancer and also because of the delicate location on my lung. I also had mild bronchiectasis. I have just started the azithromycin and will add rifampin later this week, with ethambutol to follow in two weeks. I am very worried about side effects. I am thinking about retiring (I'm 65) now instead of at age 70 so I can rest more. I am self-employed and really cannot take days off for illness. I'm just hoping the side effects aren't bad but honestly I am "on" and in front of people one-to-one all day for my work and I can't imagine cognitive slips or diarrhea and vomiting working well for me. I'm sure everyone else feels the same. Do I need to take my days and live them because there may be fewer and they'll be more challenging?Thank you, Sue, for moderating, and all for reading.
I am about to begin this journey unfortunately therefore I am currently here for random information from random people with the same thing. I was just told a few weeks ago that I have Mac and Bronchiectasis. I also have other underling lung issues and sleep apnea. So needless to say, this will most likely be a long journey for me. I am however hoping for the best outcome. I will keep you posted after I start the meds, as I need to have my stress test 1st and we are still waiting for the sensitives results. I had to do a 2nd set of Sputum tests because the lab threw out the 1st set without doing the final set with sensitivities after 30 days. Everything should come together within the next 2 weeks or so. I will keep you all posted! Thanks for listening to my story. Also praying I don't get nauseous! I hate that feeling! Weight loss, I could afford to lose a few lbs.! hahaha! Trying to keep it light. Lisa~
Sue, will a trip to the beach make my MAC worse?
I had to stop taking the big 3 because of a bad reaction. I am asymptomatic, so am under observation by doctor—disease had not progressed after last x-ray.
What suggestions do you have for me?
Thank you—you always offer good info!
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Sue since I am a beginner I don’t know if you received my response to you.forgot to add names Ethanbutol ,Azithromycin, Rifamapin