MAC Big Three Side Effects

NTM (nontuberculosis mycobacteria) of which MAC belongs to IS in the water and soil. It is in the environment and EVERYONE is exposed to it. It’s just that some of us are susceptible to getting infected with it while most people do not get infected. Many of us get the bacterial infection because of having bronchiectasis (but not always). NTMir and YouTube have some great webinars about NTM.

NTM (nontuberculosis mycobacteria) of which MAC belongs to IS in the water and soil. It is in the environment and EVERYONE is exposed to it. It’s just that some of us are susceptible to getting infected with it while most people do not get infected. Many of us get the bacterial infection because of having bronchiectasis (but not always). NTMir and YouTube have some great webinars about NTM.

I would suggest everyone who is taking the ‘big’ 3 for MAC to google each one. I have been on the big 3 for two years and just now looked each up paying close attention to the side effects. I have been experiencing severe dizziness for well over a year - I even passed out once. I mentioned it to my primary care doctor but a reason was never found. I knew Ethambutol affects our eyesight and one affects our hearing (mine is getting very bad) but ALL 3 produce ‘severe dizziness’! I’m talking about getting out of my chair and walking 6 feet when I have to quickly sit down to avoid hitting the floor. In fact I did pass out once. I have mentioned the dizziness to my primary care doctor - that it negatively affects my life more than anything. When I looked into the side effects for each med ‘severe dizziness on each jumped out at me. At least now I know why!

Hello, and a belated Welcome to Mayo Connect and our group.

Have you also been diagnosed with Bronchiectasis? If so, has the pulmonologist started you on an airway clearance routine?

Sometimes, depending on the severity of a MAC infection, a wait and see approach, combined with daily airway clearance, often using 7% saline solution, can be used to decrease the level of MAC in your lungs and avoid the antibiotic regimen. This is not as scary as with most infections, as MAC is very slow-growing.
Good luck with your IG infusions, I hope they go well.
Sue

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.

Other people who are susceptible (besides those with Bronchiectasis) include people with other lung diseases such as Cystic Fibrosis and Emphysema, people with compromised immune systems, and in some cases, people who have had lung surgery.

Airway clearance helps eject the mucus (and the germs it contains) from our compromised lungs to prevent colonies from growing. Normal lungs are able to do this with routine coughing and throat clearing. For me, it is the most important part of staying healthy.
Sue

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.

I have been on the big 3 antibiotics now for 8 months, which in the beginning I was very hesitant on starting keeping in mind that I am 76 years old. I have been somewhat lucky that I have mostly only had nausea often and diarrhea which is mostly gone now. However, I went to my vitroretinal specialist this past week and fail my second visual field test. Because of that and I am susceptible to getting glaucoma as my mother had it and went blind she took me off rhe ethambutol as that can cause glaucoma and eye problems. I checked with my infection disease Dr and he was OK with it. This is not that common but always something to be aware of. It is scary to think about the long road ahead on the antibiotics, but it is the best way to go unfortunately. It is much better then having to take the IV course.