Connect
← Return to Big 3 didn't work for MAC; have now acquired fungal pneumonia
Discussion
Big 3 didn't work for MAC; have now acquired fungal pneumonia
MAC & Bronchiectasis | Last Active: Jan 25 1:56pm | Replies (11)Comment receiving replies
I had the big three for four years and it was ever so slowly getting on top of the MAC. My infectious diseases doctor was getting concerned about how long on antibiotics, he kept me on those three and gave me a fourth to nebulise that was Arikayse, it seemed to kill the MAC and nearly me after 6 weeks taking it daily. He reduced the dosage and I came down to a tolerable three days a week with the Arikayse. I have been clear for 9 mths now and am off the medication. I will be nebulising three times a week with a saline solution 6 and using a mucus clearance device as well as exercise. Time will tell how well all this has been. But after the 6 weeks of Arikayse daily I defy any MAC to survive that. I seriously was having trouble doing anything including walking. If it didn’t kill the MAC it would have killed me.
Replies to "I had the big three for four years and it was ever so slowly getting on..."
Connect
Thank you for telling me about your situation... it sounds like you've had a long journey. I too hope you continue to be clear of MAC.
My infectious disease doctor is currently having tests done on samples from the bronchoscopy I had. It will determine if any other antibiotics work for my MAC since the Big 3 didn't work after taking them for 18 months. He has already said that Arikayce might be a possibility. I sometimes wonder why he didn't prescribe it when my tests kept coming back positive during the 18 months on the Big 3. It sounds like you had a really bad time taking it!
Since I'm still taking voriconazole to kill the fungus infection I have, my doctor says he can't start treating the MAC again until the fungus infection is gone. I will keep your experience in mind if and when Arikayce is recommended.