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DiscussionMAC: Anyone ever felt pain from MAC? So many questions
MAC & Bronchiectasis | Last Active: Mar 17 9:32pm | Replies (85)Comment receiving replies
Replies to "@jr2366 Yes Jennifer- welcome! Gina is correct. Many of us are now on Arikayce. And welcome!..."
Hi Irene, do you have a contact info for the Arikayce study please? Also, any contact info where you apply for the grant to get it? I may need it. Thanks, Magdalena.
Hi Irene I’ve had a lung biopsy I’ve had a bronchoscopy which told me I had Mac/Mai no my dr did not mention the 3 medications only Arikayce I’m covered thankfully for the medicine. I am not sure why he went for the Arikayce on me my dr. My Pulmonologist is the one who put me on this Arikayce. I do have my moments I cry and don’t quite know how I got this that’s what’s frustrating also. I’m wondering if the medicine will work and if I can eventually be medication free for a little while after my 12-18 months I’m also scared that the medication won’t work but as I read the statistics it’s telling me the ratings are very good with fighting this Mac bacteria I’m hopeful I pray often . My husband is very Patient so far however it’s only been about 12 days on Arikayce I hope we both will get through this and we both live long kind of scared I’m not going to lie I need to know people have lived many years with this and I haven’t heard many people so far I’m the type of person. I need lots of positive talk about this Mac or I get very nervous as ling as I hear positive things it calms me down thanks for listening and you can write me back I would appreciate it