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Diarrhea side effects from the Big 3
I began taking the big 3 in mid-December and am also on Arikayce treatments daily. My main side effect is frequent diarrhea, and I also feel very weak. My ID physician prescribed anti-diarrhea powder, but the diarrhea only subsided slightly. I am at the point where I have to wear Depends, which has put a hold on my marital love life. I want to be cured of the MAC, but is this treatment worth it? I have a virtual appointment with my ID physician tomorrow. Please help me!
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Also read up on the FODMAP diet from Monash University.
Harry
Thank you, Harry. I will definitely google the FODMAP and read up on it. I so appreciate your help. This group has been so supportive with wonderful information to help me with my digestive issues.
When my ID physician first prescribed treatment for MAC, he told me that I would be taking 3 oral antibiotics (azithromycin, rifampin, & ethambutol) for approximately a year to 18 months. He told me that I would be taking arikayce via a nebulizer in the beginning for 2 months or possibly more. Once I was on all four medications for 2 1/2 months, I tested negative for MAC via sputum samples. My ID physician told me to stop arikayce treatments once my third month supply was gone. I don't know why, but that was his plan in the beginning when I first started treatment. I am very happy that my treatment is being successful after only 2 1/2 months, and my physician has reduced the dosages of two of my medications and stopped the arikayce treatments. I am still taking the full dosage of ethambutol but am hoping the dosage can be reduced as I progress. My side effects have not been fun.
I get diarrhea about every third day. It must be the buildup from the antibiotics. I eat yogurt, smoothies, and I take digestive supplements.
Hi Machelp, I also lost weight with MAI, MAC, and now dealing with M. Abscessus colonization. With this round of illness, I went from 122 to 101lbs over the course of six months with loose, large stools three times a day. I've worked with gastroenterology to try to gain weight and to manage all the symptoms of IBS with diarrhea. Their main concern was for anything major in the digestive system so I had an upper endoscopy and colonoscopy to rule that out, also motility testing. Next is to gain weight. The condition requires much more calories and protein to help fight the infection, so I drink protein smoothies daily (OWYN with 32g of protein). I work with a functional medicine doctor and associated dietitian. I tested positive for SIBO (small intestinal bacterial overgrowth) and intestinal dysbiosis (basically an imbalance of yeasts) and have been on a FODMAPs diet which helped a lot for a while (but didn't resolve the GI symptoms) and now on a low carb and completely sugar free diet (followng Wahl's). I started in October 2023, and now, after continuous treatment for both of these GI conditions, I'm finally feeling like my body isn't being assaulted every time I eat. Diarrhea stopped completely. I've gained 5 lbs and don't have as much fatigue or burning sensation in the muscles. Less inflammation all around.
Solving GI issues is complicated for otherwise healthy folks, but for those of us with serious medical conditions and treatments that exacerbate GI issues, it's even more complicated. Working with gastroenterology and functional medicine have been key for me. I highly recommend trying this route in addition to your Pulm and ID docs. Also important to check for osteoporosis. It's just so hard to get better when you're malnourished. My functional medicine doctor is at Cleveland Clinic (she's also an internist and integrative medicine doc) and only have virtual appointments (her appts are covered by insurance though most testing isn't). Wishing you the very best with your treatments and health, Roisin