Diarrhea side effects from the Big 3

Thank you so much for you comment. I stopped all 4 of the antibiotics last Friday due to quality of life issues which were almost unbearable after taking the medication faithfully for 3 full months. I talked with my Infectious Disease physician this morning. He advised me to start back on one medication today at 1/2 the prescribed dose. Tomorrow, I add a second medication at the normal dose. The day after tomorrow, I add a third medication at 1/3 of the prescribed dose. The next day, I resume the Arikayce via the nebulizer. He asked me to keep a log of how I am feeling after each day of adding a specific medication. He feels the reduction of the antibiotics may have to be adjusted depending whether or not negative side effects occur on which particular drugs. I am going to follow his advice and give it a try, as I would like to be cured of the MAC infection. However, if the unbearable side effects do not lessen, I may have to throw in the towel. Thanks so much for your support. I have felt 200% better being off the antibiotics for a few short days.

I have been reading this thread. I eat Fage 2 or 5% plain yogurt. I've also eaten sauerkraut and consumed Kefir. It worked. I no longer have the issues of unexpected diarrhea. I am 5'9" and lost down to 120 pounds between the NTM and Flu A(Jan '25). Normal for me is 133 pounds. How tall are you?

I wondered why people with NTM and 'regular' TB tend to be so thin. According to studies I read, there is a negative energy balance and substantially increased energy needs to fight the infection. Also often there often is a decreased appetite and feeling full quickly, side effects of medications and fatigue.

I drink one or two Vanilla protein drinks daily (Boost or Premier Protein) along with my meals. I have not lost anymore weight and have put three pounds on which I consider a success.

This is just an aside. My local Pulmonologist and Infectious Disease doctors in my city of 99,000 people wanted no parts of treating me once the sputum test after coughing up blood in Sept '22 returned with the abscessus diagnosis. I have to drive over 370 miles one way to my pulmonologist every three months.

Thanks for your post, notnancy. You asked my height. I am 4' 11" and weigh 80 lbs. Oh my goodness! What an inconvenience to drive 370 miles one way to visit a pulmonologist! Have you considered doing virtual visits occasionally instead of in-person visits? Thanks to advice from others in this group, I have stocked my refrigerator with yogurt with active cultures, sauerkraut, and kefir and enjoy trying new recipes using those ingredients. This group has been so supportive and has helped me realize that I am not alone in my misery.

how ate you feeling now and are you still using antibiotics?

Thanks for you concern. I was completely off all the antibiotics (azithromycin, ethambutol, rifampin, arikayce) for five glorious days and immediately started feeling better. As my ID physician advised, I started back on the antibiotics at a slow pace (one at a time) and two on a reduced dose. With the reduced dose, I am doing much better with fewer side effects. The good news is that I tested negative for MAC so I will no longer be doing the arikayce breathing treatments with the nebulizer after I take my final dose tomorrow. I now feel hope that I am progressing in the treatment of my MAC infection. My ID physician says I will need to keep taking oral antibiotics for up to a year or more to prevent being reinfected with MAC so I will continue to follow his guidance. I have another cat scan of my chest on May 10 and am hoping for good results.

wow that's awesome! how long total were you kn antibiotics b4 getting the negative MAC result. will you only take 2 antibiotics for that year or all 4.

I began taking four antibiotics (azithromycin, rifampin, ethambutol, and arikayce) in mid-December 2024. Since I recently tested negative for MAC so my ID physician reduced the dosages of azithromycin and rifampin and told me to discontinue the arikayce when my monthly supply was gone. The dosage reductions have helped to reduce the side effects I was having (especially diarrhea). I am still taking the original full dose of ethambutol. He told me that I will, most likely, continue the three oral antibiotics for at least a year to prevent from being reinfected with MAC. Fingers crossed!

wow you are fortunate to test negative so soon! also fortunate to tolerate taking those 3 meds. I know you have some side effects but you were able to stay on all the meds while some people can't handle it. best of luck to you in kicking the MAC bug!

Thank you; and, yes, I feel so fortunate. Hopefully, the diagnosis was correct and I will continue taking the antibiotics to prevent reinfectation with MAC.

@machelp do you know why your doctor is stopping the Arikayce? Arikayce has been recommended for me but I was told I would take it daily (with the Big 3) the entire course of treatment.