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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (192)Comment receiving replies
The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.
I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue
Replies to "The treatment for MAC is onerous for many people, but if you can stick with it..."
Hi Sue, I started the Big 3 about 10 days ago and began having tinnitis after only a week of being on the meds... my ID said to stop taking all of the meds until I see my ENT next week. Just wondering what your experience has been with the tinnitis, did it start early after starting the meds and did it get worse with time or did the tinnitis stay about the same? I have a consult with Mayo next month so I'll see what they say as well...other than the ears I have had no issues with the meds
Good gosh Sue! You must be a saint!! I was browsing through and saw so many posts with your words of guidance and wisdom. I’m a newly diagnosed MAC. With mild Bronchiectasis. Has completely took me from a vigorous 58 year old, doing 2 hour workouts three times a week, working full time, and watching 3 small grandchildren almost daily— to being out of breath walking around my house. Fever for 120 days and counting with chest pain, fatigue, breathless. SUCH a 360 for my whole world and now add the anxiety and depression. Need help!!
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Sue, it was helpful to read about your experience taking the big three antibiotics for MAC; thank you. I like the idea of eating small quantities of quality food throughout the day. When I read about the side effects I freaked out. I had a hard time starting rifampin tonight because of what I'm reading. Does life ever go back to normal or am I in for a lifetime of managing this disease? I think my pulmonologist stated the most optimistic outcome to get me on board with treatment. I thought it needed to be eliminated but after doing lots of reading it seems "subdued" is all I can hope for.