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Coughing up blood
Hello everyone - hope you are all well. I’ve been on the big 3 for 5 months and am still coughing up blood. My pulm wants to add Clofazamine but the side effects sound rough. Has anyone had experience with this medication? I’ve coughed up blood 8 times this year since diagnosis w/4 trips to the ER because amount was significant. The whole thing has been a bit of an ordeal. Good news is that the Mac/Bronchiectasis is minimal and NYC pulm isn’t sure why blood is appearing. I’ve had a brochcosopy and next week I’m having an endoscopy. Thank you and have a great day. - Joanna
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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.