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18 hours ago · What now? What else can be done? in MAC & Bronchiectasis

Shooei. I wonder if taking xarelto for heart would be worrisome with the 7%? I have also had episodes of haemoptasis. My doc is starting me with a saline nebulizer and I am picking it up tomorrow. I do not know what he has prescribed for concentration.

Tue, Jun 11 6:50am · Sharp pin like plain in MAC & Bronchiectasis

Poppins, I have an extremely sharp stabbing like pain in my ribs under my right breast. That is the lung where my Mac has taken up residence. This pain comes and goes but when it does, it is excruciating to cough, which I constantly gave to do. I attributed the pain to coughing too hard and spraining the intercostal muscles. The pain usually lasts for several weeks at a time and makes it hard to wear a bra!! Lol. The area that gives me pain is an area where I had broken ribs from a bout of pneumonia coughing several years ago.

Mon, Jun 10 7:07pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Windwalker. What is a suseptibility test. I have only had a sputum culture about 4 or 5 years ago.

Mon, Jun 10 11:07am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Kathyhg, the azythromycin and the one that begins with flutac…something. They did not cause the afib but rather they aggravate the condition that already existed. That is why we are considering the Arikayce. Are you experiencing rapid heartbeat? I am not a doctor and cannot diagnose anything, but it is good that you are getting this checked. The symptoms of MAC and bronchiectasis are indeed life changing and sometimes debilitating and I know we all will do whatever it takes to be rid of them. I am grateful to have this forum and the combined experiences of so many caring and sincerely helpful people who share their journeys. I don’t want to worry you or cause you to question what has been for many a successful treatment, I just wanted to share my experience and be as helpful as I can. Best to you.

Mon, Jun 10 9:16am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Kathyhg, I cannot take the big three because of a heart condition called atrial fibrillation. 2 of the big three cause atrial flutter and rapid heartbeat and put me at risk for stroke. Also the xarelto that I take for blood thinning is contraindicated with the big three drugs. If you are having heart issues with the big three then you may need to check in with a cardiologist to find out why. My best wishes to you.

Sat, Jun 8 1:05pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

angiejohnson. I just reread you post and realized it was the drug company. Did you contact them directly?

Sat, Jun 8 1:03pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

angiejohnson. I am researching the Arikayce now and am wondering who the “they” that you refer to as who provided you with the copay card. Was it your doc or your insurance?? I am on Medicare with an insurance in my part D coverage.

Fri, Jun 7 5:29pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Heathert. I sent a reply to you but the auto correct sent it to heathery 3 times!!!! Lol. I just wondered how long and how often you took the amikacin? My doc wants me to start on it. Was it expensive??