Daily dosage of Rifampin Ethanbutol and Azithromycin

Thanks for that info. I do want to ask why they have to add an inhaler with the three meds - does the inhaler not work by itself? I see my pulmonary doc Fri so will hopefully find out and let you know what I find out.

I had s similar experience. About a year and a half ago I just had a couple nodules. I started getting immuniglobulin infusions for my Immunodeficiency. There was no growth for awhile. Suddenly it just started getting active. I am showing inflammation in both lungs now and new tree and bud growth. I also started getting other types of infections. I tried the big three several months ago but could"nt tolerate it. It was highly recommended that I try again because I coughed up some blood. I was referred to UCLA and was scheduled for the day after Christmas. I am also scared but I really need to get through this antibiotic treatment. I had vision problems while on Ethambutol and pretty bad cramps and diarrhea. If anyone has any recommendations for the gastrointestinal side effects I would appreciate hearing them.

@xfirerose Hi. If you were referred to UCLA you can't be too far from me. I live in Redondo Beach. I've been on the Big 3 since September. For about the first month and a half I had terrible stomach cramps and various forms of repeated urgent bowel movements starting about one to two hours after taking the meds and lasting for several hours. I felt afraid to try to go anywhere on "medicine days." Gradually my body seems to have become more accustomed to the drugs. I still have occasional diarrhea bouts but they are usually single bouts, not repeated. I tried different strategies at first -- taking the meds with a meal that included rice, taking digestive enzymes, trying an array of time schedules. After 3 months, I would say it has been just a matter of my body getting used to the drugs. When I asked my I D doc for suggested remedies for the stomach issues, he said most patients just figure out what works fir them because everybody's different. I know it may not help, but I think he was right. You just have to find what works for you. I hope you find your way and the drugs help. Olivia

When taking the big three does taking probiotics help?

@Havah and Onana.....Probiotics help intestinal problems but there are so many other side effects resulting from taking the big three every day as I do. I am on a high daily dosage and although the doctors are concerned about losing sight and hearing......one thing most doctors don’t prepare you for is the huge changes in your mental and emotional well being. These drugs affect every part of your brain, attacking emotion and cognitive centers as well as more obvious physical ones. It goes beyond just not feeling yourself all the way to feeling like you are inhabited by the devil. Everything looks bleak, Hope is lost. You rant, you cry. It is simply horrible. You feel completely miserable. It doesn’t last all day thank God but you can’t predict when it will come on or how long it will last. Ive been on these drugs for 6 months plus Arikayce since October and there hasn’t been a day since that I have not broken down sobbing in tears. This is not like me...in fact I haven’t felt like me since last May. I’m pretty miserable. And I am looking forward to the day I don’t have to take them.Anyone else find these drugs emotionally denilitating?

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My infectious disease prescribed Florastor probiotic. It is not a bacterial type of probiotic so it is not as much affected by antibiotics. It does help, but It does give me gas. My gastroenterologist does not like me taking any kind of probiotic; maybe because of my Immunodeficiency. So I am confused whether I should or shouldn't take them.

I’m very susceptible to yeast infections so my doctor has me on probiotics whenever I’m on any kind of antibiotic.

I’m starting them all after the first of the year. My lungs are very infected. Just finished a year on Bactrim for Nocardia. I think I’ll give it a 3 month trial and see how I do. Has anyone been on arakayce alone?

@marilynk Hi Marilyn. I cannot answer your question, but I am sure someone will jump in soon who can. I just wanted to say that I am sorry to hear that your lungs are so infected. I know how uncomfortable it is, and worrisome also. I hope that you can find a way to enjoy the holidays regardless.