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Oct 17, 2018 · use of Incruse for MAC and bronchiectasis in MAC & Bronchiectasis

My use of Incruse has helped my shortness of breath. I have only been on it a month and I was considering stopping because maybe I should save it for later, when my breathing gets worse. I was treated sccessfully for MAC two years ago with the 18 month regimen of the 3 big drugs. I have had pseudemonas (now cleared up) and I have the fungus aspergillus, which may always be present. I take Spiriva twice a day and that was all I was taking for some years. Even with that, the shortness of breath began early this year for the first time. I do not like adding in meds if I do not have to. I would like to go off the Incruse to see if my breathlessness comes back. It seems no one out there has knowledge of this drug, so I gather it is on the newer side. It is used to treat COPD but that is not what I have. I was diagnosed with MAC, bronchiectasis, pseudemonas and aspergillis, all of which have damaged my lungs. I can get pneumonia easily ,if I catch a cold, so have to stay away from sick people! Pamela

Oct 15, 2018 · use of Incruse for MAC and bronchiectasis in MAC & Bronchiectasis

Has anyone taken and stayed on this once a day inhaled medication? I take Spiriva with it as I was short of breath and my lung doctor recommended that I add it to my regimen. I have been less breathless but wonder if I could go off of it to see what happens. I have been on it for a month, with no side affects. I would love to have some feedback from anyone who has been taking it for awhile. Thanks, Pamela in MA

Jun 25, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Terri – this is Pam … I sent an email to the group a few days ago about my use of Levaquin – and had some questions – I can not see that it got posted. Do you know if it did? Thanks so much, Pam

Jun 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello – just was following the thread of various antibiotics being taken by all of you… ( I have had MAC, pseudemonas, and have bronciectasis) I recovered about 3 weeks ago from a very bad case of pneumonia which had me flat out for 5 days. As recommended by my lung doctor I took 5 days of Levoflaxin and that always seems to pull me back to health. But now again I feel something is going on in my lungs (pain when breathing) and thought I should take the Levo again. But I also noticed that in the last 3 weeks, I have suddenly become very breathless when just going up and down the stairs. I was reading about the side affects of Levo and it mentions is can cause pulmonary fibrosis or IPF… rather scary as that is fatal. And I have taken the Levo, on average, twice a year for the last 3 years when I get pneumonia. Has anyone with mac gotten out of breath for periods of time, then gotten better? Has anyone taken Levoflaxin and had side affects? If the Levo is causing my breathlessness, clearly I feel I should not take it. I have a CT scheduled in two weeks. Pam

Mar 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

This was very helpful Shari – thanks so much, Pam

Mar 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks for this info Shari – when you did take the V Fend, did you have a lot of side effects from the med? My doctor mentioned this drug but said it was a "big deal" and I had to be on it for 3 months. Can the aspergilllus just go away in time? Pam

Mar 22, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hello Linda – this is Pam. I have not been on the site for awhile now but a new issue has come up for me and I wonder if you or anyone in the group has been diagnosed with the mold ASPERGILLUS? It was found in a routine sputum culture. I am not coughing and feel well, but my sense is that it could just begin to grow and become a problem. Has anyone dealt with this and done the treatments? Any first hand experience from anyone in the group would be greatly appreciated. Thanks, Pam