How MAC patients have tolerated taking the 3 antibiotics

Side affects are different for everyone. Although stomach upset/loose or diarrhea seems to be a common theme. That's why so many of us take probiotics and eat yogurt and such. Your liver will be checked on a regular basis...Probably every time you see the doc, you will have blood work. I haven't had any issues with the liver, if that is helpful for you. Be prepared to go longer than 18 months as it may happen. Your eyes and hearing will be checked on a regular basis as well. It's a long haul, persistence helps and a good attitude, exercise, airway clearance and staying away from possible exposures. It can take a few hours a day to put this at bay with nebulizing, water boiling, cleaning equipment, exercising, but they are all VERY important to get healthy. Best wishes, hang in there, there's people out here that understand!

Welcome to Mayo Connect. In this group we all share the unwelcome diagnosis of MAC and/or bronchiectasis, and everyone is generous in sharing their experiences. @northland gave you very good information - after a while you may feel like a pin cushion - but the effects need to be monitored. One helpful bit of advice I was given by my primary when she heard what drugs I was taking - DO NOT drink alcohol or do anything else to tax your body's ability to handle breaking down and eliminating the antibiotics. This is especially true if you have another underlying conditions (like CLL) that also impact your liver and may require other drugs.

Another sometimes-ignored way to help yourself is rigorous airway clearance to help get the mucus (hiding place for germs) out of your lungs. If your doc has not gotten you started on it, you might want to ask for a respiratory therapy consult. They will show you how to do it, and probably provide a small hand-held device to assist.

Be sure to wander around the various posts in the group to learn how others are working to get healthy.
Are you seeing a pulmonologist for your care?
Sue

@pollyflinders, Welcome to Mayo Connect. As you have been reading for the past month, there are as many ways of living with MAC as there are people who have it.
You asked about how to tolerate the 3 antibiotic regimen, probably the top concern in treating this infection, and you will find people here to share their methods.
Each person finds their own way. When I was on the Big 3, there was NO way I could take them in the morning and still function. I experimented and found that if I took them, with a tiny snack and glass of water, before bed, I could manage. When I called the doctor's office, his nurse said "It is more important to take them when you can tolerate than to quit. Do what works for you."

Then I figured out some other coping strategies - I had no appetite, so I ate a tiny, high value snack every hour - an ounce of cheese, 1/2 a protein drink or 6-8 ounces of homemade smoothie, a few nuts, 1/2 and apple. I took a probiotic and ate live culture yogurt to help my gut bacteria. I sucked on ginger candies or sipped ginger tea to fight nausea...

Have you told the doctor what you are experiencing?
Sue

Thanks Sue for your reply. The last time I saw the specialist I felt I was doing fine and I’m not due to see her again until January. I’ve a number for a specialist nurse so I’ll phone her next week.
I appreciate the information regarding your experience. Thanks

After reading so many comments, I am a little concerned that my doctor has said nothing about how I can/should take care of my lungs other than taking the three prescriptions. He just doesn't give me much information, other than I have MAC. I don't even know which kind. He did a culture, but told me nothing about the results. Mine is not very bad, but I'd like to keep it from getting worse. I am 79, and weigh only 95 pounds. I have several other health issues that I am learning to deal with, but by far, the CFS is the hardest! Sounds like I need to drill my doctor...

Has your doctor talked to you about airway clearance. There is a Facebook page called Lung Matters that has a lot of very valid information on keeping your lungs clean, probiotics in particular for any stomach issues, etc as you continue with the antibiotics. I've found the page very useful for managing Mac and the antibiotics.

That is an old comment from when I first discovered this site. I have since changed doctors, and added another specialist, but thanks!

I had MAC several years ago, had an allegorical reaction to Riffabutin.
Fortunately, they were introduced separately so I knew which one I had the allergic reaction to.
I am fine now.
Will always have bonchiectis

Sue, I was the complete opposite. I went on what I call the pot roast diet and gained 40 pounds over 3 years. I had no appetite, wasted away to 128 lbs until treatment started, then I ate everything I could with a lot of pot roast. Maybe that helped with my tolerance of the big 3?

I also was told to take all three together with pyridoxine vitamin for my eyes and hands and feet numbness. I swallowed my first days worth this morning, so far I'm fine. Has anyone had any problem with their eyes, hands, and feet?