How MAC patients have tolerated taking the 3 antibiotics

I started the Big 3 this past summer. I was terrified, too. The first week I only took the azithromycin. The second week I added the ethambutol, then the third week I added the rifampin. This serves two purposes. It gives your a body a chance to get use to the antibiotics. Then, if any issues develop, it is easier to figure out which antibiotic is causing problems. It is also important to take a probiotic. I wait four hours between my medicine and probiotic.

I as told by my doctors that the reason for the rifampin and ethambutol is so that the azithromycin won't become resistant and that's why it's important that they are taken with each other. Maybe some of you have heard otherwise???

The NTM infections are "somewhat" responsive to each of the 3 antibiotics, so if one of the 3 weakens the bacteria, the others will kill it off. Otherwise, some of the bacteria dies, but the strongest or most persistent go into hiding & survive - with an increased resistance to azithromycin - this is how "superbugs" like MRSA get stronger over time.

Sometimes, when one has issues with either the rifampin or ethambutol, the docs will continue the others - possibly adding Amikacin or another inhaled antibiotic as well. And sometimes, particularly with M. Abscessus, the bacteria may resistant to the antibiotics already, based on susceptibility testing. Then different drugs will be used, possibly via a PICC line or IV.

There have been a few small scale studies that indicate some strains of NTM can be fought with only one or two drugs, but the results have not been consistent enough to alter the standard protocol.

In any case, airway clearance is important along with the drug therapy, to avoid giving bacteria a good breeding ground.

Are you on the antibiotic regimen now?
Sue

No. What is airway clearance? I have seen that term before and not clear what it means.

Hi, I am new to this forum. I started the Big 3 around two months ago at the initial MAC diagnosis. Some people are for taking the drugs, some say, lets watch the progression of the disease and start the Big 3 when the infection gets worse. I do understand both arguments. For me the answer is rather simple. If these drugs do not work now, they will definitely not work if/when my health worsens in the future. I do live in a very stressful environment and so I am not keen on taking chances when it comes to my health. To answer your question: when I started, I took them all together and had terrible diarrhea and stomach cramps in effect. It was really bad. I work in a very public, exposed environment, so you can imagine what I went through. I started taking Imodium. It helped a bit, but it definitely was not the solution. The doctor then told me to take ethambutol on empty stomach in the morning and rifampin + azithromycin at night before going to bed (and take Imodium half an hour before). I experience no diarrhea or stomach cramps if I take the Big 3 in this way.

I take all three at night to mitigate those same symptoms. Plus I can then eat what I like during the day and get all my probiotics in. S Boulardii also helps.

I take the Big 3 at bedtime, this mitigates some side effects for me. I eat nothing after 7.30pm. My bronchiectasis is stable and after 7 months my first sputum test is clear. I continue to nebulise to cleanse my lungs. I take S. Boulardii and other probiotics. I have experienced a 10dB hearing loss and now have tinnitus but I'm feeling good - most days.

Hi , this is my first comment here. I have Bronchiectasis and Mac and I am taking all three antibiotics now for a total of seven pills per day.
I first started with Azythromyacin 250mg twice per day, it gives me rashes so I always accompany it with 50 mg at an Allergy formula and this works for me.
I tried next the Rifampin last summer and could not tolerate the two doses , I got bad nausea and vomiting so I stopped it completely.
I then decided to get my body used to the medication by taking only one pill at a time for about one week and it was ok so I added the second pill and it worked.
I did the same fpr Ethambutol 400 mg 3 X per day, again I took one at a time till I now can take all
I am getting a reaction, the first one is Arthritis of my hands mostly on steroids very painful to my right thumb to the point that I have hard time to turn on my electric toothbrush and opening bottles.
The good news is that after two months I am starting to see positive results, less coughing and less mucus, also the mucus has changed colour to very pale when I spit it out.
I also use 3 inhalers during the day, I have been using them since getting Bronchiectasis since 2016 .
I just turned 80 in October.
I haven’t been told to do some nebulize , I will have to ask my Infectious Disease specialist about it.
I’m also going for weekly blood test for six weeks and waiting for a CT Scan for quite a while, I live in Canada so the waiting is normal here but everything is free including all lung related medications.
I hope this helps someone if they have trouble with taking the 3 MAC meds.
Good luck every one.
Forgot to say that I will take these meds for one year but I’m okay with it because I have learned how to take them . Always take with food, and take a probiotic , this has worked for me.
Andrée

I take Azithromicin, Ethambutol, and Rifampin. Azithromicin sometimes gives me severe stomach cramps, but they last only about a half hour. I take the Azithromicin after breakfast, the Ethambutol in the afternoon, and Rifampin at night. I also use probiotics.

I was put on the 3 meds today, I am 64 male and have stage 1 cll. I am very concerned about the side affects
and what quality of life to expect.. The infectious disease specialist said the treament would run 18 months and it would hit my liver hard!! not real sure what that means, i pick up the meds tomorrow..