Newbie here. Scared and overwhelmed by MAC treatment plan

It seems some people tolerate medications and get little side effects from them while others are quite the opposite. My husband is one of those people who tolerate easily. I am one of those people who reacts to virtually everything. People who do not get side effects sometimes just don't get it and that includes Drs. I often wonder why some people are so sensitive to things.

My doc added mycobutin. But it made me feel very ill.

Hi, let me see if my experience can help. I was already on several meds for lung related issues since 2015 so the Big 3 + Amikacin 1st inhaled then a PICC Line proved to be too much as the side effects were not easy especially if you were once active and independent, note I was on the Big 3 for almost 6 months when they started the amikacin. It was hard for me to ask for help even from my family but as I progressed I had no choice as I was also on oxygen. The worst for me was the fatigue and having little to no appetite and an overwhelming feeling of being unwell. I used to do my best to clean up but had to hire someone to do the daily housecleaning and my husband/family would leave easy to prepare meals. I would drink those protein drinks that made it worse until I tried Fair Life and those helped, purchased at Costco. I tried to remain as active as possible throughout my illness by just moving and no matter how tired I was or felt I knew exercise or movement would help me. My family would help me get ready so organization for me was a must as I could tell them exactly what I wanted and where to put things if washed. It was hard showering especially washing my hair so I started washing 1 x a week, using a terry cloth wrap to dry and just resting prior to getting dressed, everything was planned out as best I could. The good days for me was planning birthdays or small gatherings for my planning and my housekeeper would do the set up as one thing this taught me is letting go of trying to do it all, you just can’t. I love getting together with people especially my family, and this was a happy time for me as I focused on others and tried not to sit in a pity pot. It did become more difficult as I noticed changes in my appearance ie., loss of weight, hair loss, clothes baggy so didn’t want people visiting those were my bad days and going to do many doctor appts I hated them until I started on the transplant journey in 2023. Then in 2024 I received the gift of life I had a Double Lung Transplant and am now on a new journey in life and could not be more grateful🙏🏼🙏🏼

Curious how old you are Helen when you got the transplant?

I am currently 64 years young and I had just turned 63 in February and had my DLT with a heart repair in March 2024 and felt older than I was and haggard and now new life pumping into me😁

I’ve been on the Big 3 for 9 months and have noticed that some of the side effects have decreased over time. Like some of the others, I use ginger and ginger ale to help mitigate the nausea and take probiotics without fail. Also, finding the right time of day for you to take the meds helps. I just got my 2nd MAC-free culture in a row, so I feel like the antibiotics are working! Power on!!

Thank you! Can you talk more about timing your meds?

Sure. For me, if I take them later than around 9:00 am, I feel worse the next day than if I take them early. I take Rifampin as soon as I wake up—usually 6:30 or 7:00. Then about an hour later I take Ethambutol and Azithromycin. I start feeling less than good by the afternoon, and the worst part is when I’m asleep. I tried taking them all at night, but I would wake up feeling absolutely awful. I think we just each have to figure out how and when our bodies are going to have side effects. I will say that Friday and sometimes Saturday are not my most perky days!

Oh thank you! I have more questions if you don’t mind. How did you figure out the spacing/timing? How did you know let 1 hr pass between drugs? Are you saying you are able to sleep through the side effects? Finally, what days of the week do you take your Rx which make the weekends harder?

Honestly, a lot of trial and error! At first I was trying to take them with food, but that made the stomach upset and nausea worse. Then I started looking into rifampin and discovered that some people say to take it on an empty stomach. Then I saw a comment on this forum about spacing rifampin an hour before the others, so I tried it. Trying to take them at night made me realize that the worst of the side effects for me start about 8 hours after I take them, so I’m sleeping through a lot of it. I’m guessing everyone’s optimal “timeline” is a little different? I take them Monday, Wednesday, and Friday.