MAC: Anyone ever felt pain from MAC? So many questions

I definitely had chest tightness and pain intermittently when I was first diagnosed . In fact, I was worked up initially with an Echocardiogram and stress test, both which came back negative. CT and bronchoscopy needed to diagnose MAI. After about 3 months of the BiG 3 antibiotics, the symptoms improved considerably.

I've had the same 3 or 4 times due to rib sprains due to coughing. They last about 4 weeks.
Treat with heat pad and back brace. After the last bout, I bought a rib belt.

I get rib pain, it's something I have had for years, called Costochondritis. Mine gets irritated from coughing when I nebulize. Do you have Bronchiestasis? I'm sure other people on this blog will give their input...about this!

No. No airway clearance mentioned. I haven’t coughed any or had any fever. Just shortness of breath, abdominal and back pain.

Hmm, maybe you need to call and ask. It is a huge part of clearing our lungs to get rid of the mucus that harbors the MAC bacteria. And accumulated mucus can contribute to your shortness of breath.
Have you been diagnosed with asthma, bronchiectasis, COPD, Cystic Fibrosis or another lung disease? Usually one or more of these go hand-in-hand with the MAC diagnosis.
Sue

I have asthma

I never have anything to cough up. I also have a dry cough

Hi, Jennifer

Just a note of encouragement for you: I was on the three meds often prescribed for MAC, which I have (azithromycin, ethambutol and rifampin), for a year and a half without any significant trouble. I do admit having had some diarrhea, sometimes a bit of chest tightness (not pain), and I also felt a bit more crabbier/emotional than usual. But the drugs did help slow my illness. I am not sure if this helps or not, but I have GERD, too, so I also took Nexium in the mornings. I have a feeling that the Nexium helped me tolerate the meds, but I think a doctor could chime in on that. I prayed often that I would be able to tolerate the meds. I have since learned that clofazimine has good results for some, though only certain hospital clinics can prescribe that, apparently. Ask your doctor. I wish I had been able to get that. I wish you all the best. Stay strong. You can do this!
Mokie

Thank you!

I have been my mom's caretaker since 2019 when she was put onto hospice because of her MAC. She had so much pain that it could not be controlled. Fast forward to now. She's nearing the end of her life, after coming off of hospice after 11 months and fighting so hard. She has end stage COPD along with her MAC. We had got the MAC to go away at one point with just azithromycin and ethambutol because she couldn't tolerate arikayce, amicaycin, rifampin or anything else. Now it's back with a vengeance and the pain that comes along with it, is so severe for her because of the lesions it creates. Amicaycin is great for MAC because MAC creates a hard shell over itself on your lungs while it eats at your lungs. Amicaycin softens that shell so the medicine can get to it. However, with her having COPD/emphysema so bad the amicaycin was putting too much vapor in her lungs and making her feel as if she was drowning. Her pulmonologist said that wasn't true but we had an ER dr xray her lungs as she did a treatment and they saw what she meant. As for the pain, the pain meds she gets don't help these days. She's battled hard and lasted longer than doctors ever expected. She was on the transplant list for new lungs but since her MAC came back, she's deteriorating faster so they removed her. She still wants to fight and I will give every ounce of myself to help her do that.