Coughing up blood

That is my one big fear - coughing up blood. Everyone reacts differently to the antibiotics. So have you tested negative yet for the MAC? Have they explained why they are adding another antibiotic to your regimen? Has your coughing improved? Sorry for all the questions. I had a bronchoscopy before starting the big 3 and I desaturated quite badly. I had an endoscope 6 mths before my NTM as diagnosed. I have reflux and thought the cough was related to that. I started to lose a lot of weight and felt awful then I was fast tracked and after the bronchoscopy I was diagosed with MAC. A total shock. Ask about the meds - knowledge is power. Wishing you luck. I was clear of MAC for a year but it has returned. Watching and waiting as those meds were rough on my system. Thinking of you.

I too cough up blood from time to time and once it was so bad that I went to ER since it was the middle of the night and I didn't want to fall back asleep if something happened. Every doctor has told me this is normal to have this happen occasionally. Do you have cavitary MAC? My doctor explained that it can be coughing up a blood clot (I have 2 small cavities) and not a major concern. Before the cavities I wasn't coughing up blood. Everyone is so different it's hard to say, just sharing my experience. They sent me to a thoracic surgeon who looked at my ct to make sure none of my arteries were close. He reassured me that I don't need it right now, but I'm not out of the woods, so keep taking my meds.

I take clofazimine together with Azithromycin and Rifampicin. I get a sore stomach and feel yuk and spend a lot of time in the loo during the am. After lunch things seem to settle. I’m also getting a lot of reflux atm. Pharmacist suggested speaking to doc because it could be the meds. Other than that and skin color changes so far so good. Side effects listed are scary but I have spoken to others using clofazimine and there have not been any side effects other than the ones I mentioned. Does that mean you will be taking 4 drugs or are they dropping one other to then take the clofazimine?

Like others, I question why you are adding another antibiotic. Have you not converted your sputum yet? If I wasn’t converting at 5 months, I myself would be asking about Arikayce. Maybe you have discussed it and the decision was to try adding clofazamine first. I understand that clofazomine has a somewhat checkered past with HIV patients, but with immune competent patients I have been told it is fairly well tolerated. There are a number of people in this group that are taking clofazomine so hopefully they can provide their first hand experiences.

I have only coughed up blood one time during my MAC adventures- almost three years ago. I was diagnosed with MAC by accident in Jan 2013 when my PCP was checking on a totally different complaint. An x-Ray showed tree in bud in lower lobes. I had no symptoms. It tested out as simiae. We chose not to treat it. But in Sept 2022, I coughed up blood. The sputum tested positive for abscessus massilience. IV meds ( three) and airway clearance for the Bronchiectasis took care of that. I was on clofazamine for six months after the three IV meds. I would recommend going to UT East Texas at Tyler or Nat’l Jewish Health for treatment. Those two medical centers have been at the forefront of NTM treatments for decades.