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Please share your findings on this! I’ve just finished my first 3 months on medication. When I started, I thought that the medication would “cure” the mac. I’ve learned a lot since then and now hopeful that the the treatment gets it to undetectable numbers.
Question - how do the specialists figure out when that is? CT? Bronchoscopy? And I thought you stay on the meds for a period of time even after it’s eradicated?
Tomorrow is my first follow up appointment with my respirologist but I would like to go prepared :).
Thanks.
Replies to "Please share your findings on this! I’ve just finished my first 3 months on medication. When..."
@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it. "It will be difficult to establish markers that predict the optimal duration of antimycobacterial therapy in a disease in which relapse-free cure may not be the best variable to define treatment success and cure is not even defined. In many patients with NTM pulmonary disease, classical outcome definition of relapse-free cure is not achievable, either because eradication of mycobacteria is not possible or because recolonization will occur." Source: https://www.atsjournals.org/doi/full/10.1164/rccm.201507-1392LE
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@kathyhg Are you on the 'Big 3' meds? If so, three months is not long enough,. You would need to be on them for 12 to 18 months ( according to mac specialists). They will probably do a sputem test on you at this appointment (they should anyway) Please read all that you can about mac if you have not already. Good sources for info are http://www.ntminfo.org and http://www.njh.org and http://www.nih.gov. @janovr said she tested negative for mac after only 3 months on the big 3. So...….