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MAC Big Three Side Effects

MAC & Bronchiectasis | Last Active: Apr 19, 2023 | Replies (165)

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@arbakr

Hello, Sue! Yes. Within about a three month period, first was bronchiectasis. Around 1.5 months later was Primary Immunodeficiency. I got sick, and she asked me for a sputum specimen. I had a staph infection which about 20 days later also showed MAC. It was a head spinning three months for sure. My pulmonologist (nurse practitioner figured all of this out by the way) began working me up for immunoglobulin G replacement and referred me to ID. I went to see ID. She began telling me about treatment for MAC, and the strangest thing happened. I literally started blanking out about halfway through the appointment. Probably right around the time she started talking about ethambutol vision loss side effects. I'm a nurse, so you'd think I could have listened better, but I was TOTALLY overwhelmed trying to wrap my head all around this. I have an appointment with her 4/3. My husband is going with me this time just in case. I can honestly say I remember her saying come back in 5 weeks, but I can't for the life of me say what the plan was. So strange. I do know I sent in two sputum specimens, two weeks apart, and I'm having a chest CT Thursday. She said they want to be darn sure I really have MAC before putting me through that treatment. She also said she was 90% sure I do because of the bronchiectasis, PI and the first positive culture. I had my first immunoglobulin G infusion last week. It went well. Not really any side effects to speak of. It's been a crazy few months. Nobody said anything yet to me about airway clearance, but I saw it on here, learned how to do it and have begun doing it at bedtime. I've found it REALLY helps me not wake with coughing fits in the night. This group has been so helpful! I have seen all the Florida comments on here. I did learn coastal areas are most prone, especially Florida. I live in land-locked Oklahoma, so, must be the PI. I believe the PI caused multiple infections, which caused the bronchiectasis, which both contributed to my susceptibility to MAC.

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Replies to "Hello, Sue! Yes. Within about a three month period, first was bronchiectasis. Around 1.5 months later..."

I am brand new to this group and am wondering if you can educate me about airway clearance and how to go about doing it. I have bronchiectasis and MAC. I suspect I've had MAC a long time. It was only discovered a year ago when my Primary Care dr ordered a CT scan. My pulmanologist and I are holding off on big 3 and are taking the wait and see approach. I have 3 friends who have lost hearing due to antibiotics. I am a musician and this scares the heck out of me! I am grateful to have found this group.

I’m from North Carolina. What’s PI please?