← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@sueinmn

Hello @rosnat, I am answering you within a different discussion that is more current, so others are more likely to see and reply.
You wrote, "Hello my name is Rose I was just diagnosed with Mac about 1 month ago. I am 73 and I also have COPD. My dr. who is infectious disease Dr. put me on Clarithromycin 500mg 2 x a day and Rifampin 2 a day but for 7 days a week. Only after two days my stomach is a mess and also am having trouble falling asleep at night since starting these meds. It feels like what they call restless leg syndrome and I never had that before. I take 5mg of Ambien each night, have been for years because of insomnia . My question is most everyone is saying they are taking 3 different drugs not 2 and they only have to take them 3 days a week. Does anyone else have to take them everyday and he said I will be taking them for 2 years.? I can not imagine feeling this bad for years. He said my CT looked good other than the COPD no lesions or nodules so we caught it right away. Is anyone else having trouble with their legs when they go to bed or unable to fall asleep?"

I am really curious about your doctor's choice as well. It sounds like perhaps protocols are different for people with COPD. Or the specific strain of MAC you have may have been shown to respond better to this regimen. Or he may not have a great deal of experience with treating MAC infections.

Can you ask him why he chose the options he did? Feel free to refer to this document to learn more about treatment protocols:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/learn-about-nontuberculosis-mycobacteria
Or to this treatise if you enjoy wading through scientific documents :
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf

As always, the members here are happy to support you, and help answer questions, but some need to be addressed directly to your doctors.
Sue

Jump to this post


Replies to "Hello @rosnat, I am answering you within a different discussion that is more current, so others..."

I was on the big 3 for 9 months but had eye problems so they took me off ethambutol. I continue to take azirhromycn and rifampin. I have had restless leg for years and finally have found a med that works. I took 4mg of ropinirole at supper time. Four months ago it was not enough as if I sat down for a period of time during the day the restless leg would start. I didn't want to take my 4mg does of meds during the day as it made me sleepy. So now I take 1 mg of ropinirole as needed during the day and 4mg at supper time. I believe sleepless leg is hereditary as my brother has it and I suspect my father had it as well.