Azithromycin Desensitization Need Opinions Please

Hi, I'm new to this, just diagnosed with MAC. I assume you also had MAC. I'm 75 and quite honestly I don't think I am going to do the Big 3.

If you can manage without them by doing air way clearance, of course that’s easier on your system .
I stopped my big 3 after 3 months because I had hearing loss. But I got sick again; that is, fatigue and shortness of breath, which incapacitate me. So I’m back on a different 3 antibiotics again .

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As others have said, get on an airway clearance routine, usually nebulizing 7% saline and using an Aerobika (twice a day) to clear the mucus out of your lungs. I also use the free Autogenic Drainage App (free) which helps me get the gunk out. The saline is important because it helps thin the mucus but also helps makes the lungs inhospitable to the NTM. It is possible to keep the NTM tapped down by these procedures and keep from getting worse or having to take the antibiotics. I was diagnosed 2 years ago and have been doing this without getting worse and without going on the antibiotics. Many others too. Depends on how sick you are and your symptoms whether you need to take the antibiotics or not.

Thank you for responding. I'm not experiencing any problems right now with having mucus etc. I have made an appointment with an ID Dr. to see what she thinks I need compared to what the Pulmonary Dr. thinks I should be doing.

My pulmonologist had me start on airway clearance (nebulizing 7% saline) even though I wasn’t producing sputum or had any symptoms and felt perfectly fine. I was diagnosed through a bronchoscopy. Another person with MAC suggested the autogenic app. Eight months after diagnosis, I started producing sputum.

Hi Bon, In 2017 in was treated for microbacterium abscesses with 3 antibiotics. Two were through picc lines and azithromycin by mouth. Several weeks into the treatment I broke out in hives. When they started appearing on my face and lips, my Dr sent me to the ER. They suspected azithromycin to be the culprit. My Dr. sent me to a Dr. to be desensitized. It was really quite easy and I had no problem. I went in the morning and the Dr. gaved tiny amount of azithromycin and increased it every few minutes until I eventually took a whole pill. I was closely monitoring while doing this. After successfully being desensitized the Dr told me to continue taking azithromycin and to never miss a dose or I would have to get desensitized again. It must have worked, I never had hives the rest of the treatment. Hope this helps you.
Best wishes, Lisa

Hi Lisa,
Thanks for this information. Bon

In April 2022 in started Azithromycin, ethambutol and rifampin orally 3 times per week. I had previously had an allergic reaction to erythromycin- which I told the doctor. Within a few weeks I had a rash on my face, ringing in my ears, nausea, dizziness and fatigue. At 5 weeks I stopped the drugs because I was so sick. I was also afraid that I may become deaf. I too was referred to an allergy specialist and was tested for three days. There were no conclusions drawn. I stayed off the drugs for many months. My ID doctors didn't know what to do? I am now on clofazimine, ethambutol and rifampin daily. I have figured out how to lessen the nausea and abdominal pain with pantoprazole and ondansetron. My skin has become very brown. I still have ringing in my ears. I can't wait until this is over. I am 78 years old.

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