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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hello - I see you seem to be starting with the Big 3 on a daily regimen. The most usual beginning prescription is 3 times weekly. Did the doctor explain why it is being prescribed daily?
As for when to take, after 2 weeks of nausea and extreme discomfort, I talked frankly to my pulmonologist's nurse and told her there was NO way I could stay on treatment long term feeling so sick. She had me try the bedtime routine, and it worked for me as I was able to sleep (somewhat poorly) through the worst symptoms.
I managed to keep going for 18 months, 12 months 3X weekly, then 6 months daily - long enough to knock Mr. MAC way down, but not entirely out. I now manage with mucus thinners, asthma meds, 7% saline and airway clearance.
I really think the practice of starting the drugs one at a time is a good one.
Is this your first time on the Big 3?
Sue
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SueinMN....thank you for replying. I've been going back in the posts trying to find you.
I started my first treatment on May 14th. All three at once. I lasted for two weeks, then the nausea started, plus fevers, body aches, fatigue, I voice even changed. My bloodwork was all over the place....especially my heart and liver. I was thinking Covid or Flu. My Doctor went to Canada on a vacation so I went to the ER. It was neither. I stopped taking the Big 3 immediately and it took nearly two weeks to get back to a somewhat normal life. I told my doctor I really couldn't start again until after the 4th of July. We were having company and I had one more wedding cake to make and couldn't be sick. Also, requested that we do it different, like I've been reading on this website. Start with one for a week, then add a second for a week, then add the third. I have no symptoms of MAC. It was found by chance with a CT scan of my abdomen. I'm going to take them at nighttime and see how it goes. If possible I would like to keep communicating with you. I can send you my e-mail address if that's allowed. Next question? Do patients talk with an Infectious Disease Specialist in addition to their Pulmonary Doctor? Thank you again, MacInPa