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Starting MAC treatment with "big three" drugs: What to expect?
MAC & Bronchiectasis | Last Active: May 8 5:56pm | Replies (192)Comment receiving replies
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.
Replies to "Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper..."
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
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Thank you for your thoughts. I am also new to this blog and will be going to duke for opinion and discussing starting treatment for mac. Would like to hear from those who have gone through the treatment to learn how difficult it was or did it affect your everyday life. Can you travel or is that something that can be difficult.
I want to hear from you so far from my infectious disease dr its all difficult and terrible. Thank you for any thoughts on this. Miriam