1. < MAC & Bronchiectasis
Profile picture for lynncat

Starting BIG 3 tonight ….

Posted by lynncat @lynncat, Sep 18 5:09pm

Hello , I am starting my BIG 3 tonight .I was diagnosed with Mac Avium and have 2 cavities in upper right lung .My only symptoms have been a chronic cough since I had walking pneumonia at christmas time. Doctor thought maybe asthma or reflux and eventually after a Bronchoscopy they grew the bacteria . This was in May and I got diagnosed in June . However over the summer it has gotten worse ( I was away in Asia /Europe for 2 months) - the CT scan confirmed that .. I am a healthy 56 year old. No other issues or medications . However I am freaked out about the antibiotics Azithromyci 500mg, Ethambutol 1000mg, Rifampin 600 mg / my doctor said to take with food at dinner .

I have been reading so much about all the side effects 🙁 And how other people space out the meds. In 1 week I see a ID doctor to determine if I will add on the IV... .It is overwhelming, and I don t know what to expect.... most people get sick I think ? of the side effects?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for susanrg20
susanrg20 | @susanrg20 | Oct 16 9:49am
In reply to @pacathy "@susanrg20 Thank you for sharing your experiences. I see you're new to the group and just..." + (show)
Profile picture for pacathy @pacathy

@susanrg20 Thank you for sharing your experiences. I see you're new to the group and just want to welcome you. It's a helpful and supportive group. I'm really sorry you have to deal with ABPA, after dealing with MAC. I have just bronchiectasis- also never smoked.

Jump to this post

@pacathy
I have bronchiectasis as well. The doctors don’t know how and where I got all this stuff from. It’s hard not knowing.

REPLY
1 reply
Profile picture for pacathy
pacathy | @pacathy | Oct 16 3:57pm
In reply to @susanrg20 "@pacathy I have bronchiectasis as well. The doctors don’t know how and where I got all..." + (show)
Profile picture for susanrg20 @susanrg20

@pacathy
I have bronchiectasis as well. The doctors don’t know how and where I got all this stuff from. It’s hard not knowing.

Jump to this post

@susanrg20 I agree that it's hard, especially when you've made good choices. Did you have frequent bronchitis or allergies?
My allergies seemed to start after I worked in a very wet office for several months-they had to tear out walls and do mold remediation for the entire wing. I'm not positive though since my mom had similar CT findings. Before the CT that got attention, my colds had been turning into bronchitis for a few years. Had you had frequent respiratory infections, too?

REPLY
1 reply
Profile picture for susanrg20
susanrg20 | @susanrg20 | Oct 16 4:43pm
In reply to @pacathy "@susanrg20 I agree that it's hard, especially when you've made good choices. Did you have frequent..." + (show)
Profile picture for pacathy @pacathy

@susanrg20 I agree that it's hard, especially when you've made good choices. Did you have frequent bronchitis or allergies?
My allergies seemed to start after I worked in a very wet office for several months-they had to tear out walls and do mold remediation for the entire wing. I'm not positive though since my mom had similar CT findings. Before the CT that got attention, my colds had been turning into bronchitis for a few years. Had you had frequent respiratory infections, too?

Jump to this post

@pacathy
I’ve never had bronchitis. I’ve never had respiratory infections either. This all started 2 months after I got COVID in January 2021.

REPLY
Profile picture for kris2468
kris2468 | @kris2468 | Oct 17 3:21pm

I’m glad you are here. I have been on the Big 3 since August 10. Azithromycin, Rifampin and Ethanbutal every day. Hearing from another member, I space them out, Azithromycin in the morning after breakfast. Rifampin mid-afternoon on an empty stomach and Ethambutol at night. I haven’t had any side effects and there are lots of people who sail through without a problem. I hope you will be the same. I am treating this like a job, I don’t miss a dose, and hopefully my MAC will clear and I can continue doing airway clearance and exercising and eating carefully and stay off the antibiotics. Good luck and know that you are doing all that you can to progress to good health!

REPLY
1 reply
Profile picture for jmr69
jmr69 | @jmr69 | Oct 17 8:16pm
In reply to @kris2468 "I’m glad you are here. I have been on the Big 3 since August 10. Azithromycin,..." + (show)
Profile picture for kris2468 @kris2468

I’m glad you are here. I have been on the Big 3 since August 10. Azithromycin, Rifampin and Ethanbutal every day. Hearing from another member, I space them out, Azithromycin in the morning after breakfast. Rifampin mid-afternoon on an empty stomach and Ethambutol at night. I haven’t had any side effects and there are lots of people who sail through without a problem. I hope you will be the same. I am treating this like a job, I don’t miss a dose, and hopefully my MAC will clear and I can continue doing airway clearance and exercising and eating carefully and stay off the antibiotics. Good luck and know that you are doing all that you can to progress to good health!

Jump to this post

@kris2468
Thank you for positive feedback. I am not on antibiotics yet, but I get so scared listening to all the horror stories that it is nice to hear from someone who is doing ok on them. Thank you again for sharing good news!

REPLY
Profile picture for kpger
kpger | @kpger | Oct 18 11:35am
In reply to @zette "It is a frightening transition to go from healthy to fighting MAC! I, too, was concerned..." + (show)
Profile picture for zette @zette

It is a frightening transition to go from healthy to fighting MAC!
I, too, was concerned when I started the big three in late July three times a week. I was worried about diarrhea, since I’m already too skinny as it is. My clinic’s nurse suggested I take my meds before bed at least a couple of hours after my food. That way, the antibiotics can work while I sleep and the next day I can work on keeping my gut biome healthy by taking probiotics and florastor (a probiotic that survives the onslaught of antibiotics).
My primary care doctor referred me to an integrated medicine practitioner who advised me on how to keep my immune system strong. She basically told me to eat the way we all know we should eat: lots of fruits and vegetables and quality protein (chicken, fish, tofu, garbanzo beans). Avoid fried foods, alcohol, sugar and empty carbohydrates since they tend to create inflammation in the body. I did get an itchy rash from Ethambutol and stopped it after two weeks. I continued the other two antibiotics and I am now taking them every day.
So far, I’ve felt pretty good with no tummy trouble.
BTW, the pharmacy insert that came with Rifampin says to take it two hours after a meal and with a full cup of water. You might ask your doctor about that.
Good luck!!!🍀

Jump to this post

@zette I agree with taking the meds all together. I had been spacing them out during the day because I was told this would be ok. When I changed doctors he asked how I was taking the meds. He said to take them at one time. I never had any adverse side effects doing it either way. I had my first negative culture less than a year after seeing the new doctor.

REPLY
Profile picture for mamiebarker
mamiebarker | @mamiebarker | Oct 18 2:13pm

I started the big three last week after meeting with ID at Mayo Clinic I started with the Azithromycin last week this week I added Ethambutol if all goes well, I will add rifampin next week if I am coping well with these, I will start nebulizing Arikayce soon after.
It is very overwhelming. I was diagnosed with bronchi stasis two years ago and Mac about a year ago. I got very very sick this summer and spent a week in Mayo hospital on IV antibiotics. My overall lung condition worsened very quickly. I am diligently working on acceptance. It seems I was a very well healthy person and now all of a sudden I’m not. As far as the big three go, I’m taking it one day at a time I have to be able to tolerate this. I’m so grateful that this support group is available ❤️

REPLY
Profile picture for lynncat
lynncat | @lynncat | Oct 21 10:49am

Hello , and thank you for all your replies . Update so far. I can tolerate the BIG 3 just fine , Take all at night with dinner, This is my 4th week on IV Amacasin. So far so good. I do the fusion mon/wed/friday/ Had to adjust do to high dose .caused ringing in ear. lowered the dose and now seems ok . It is amazing that nurses come to my house. It has been a really good experience so far.....
only the exhaustion is a new thing. but I try to walk a lot the days I do not have fusion, Will go to eye and ear doctor next week . to check.

REPLY
View MoreView Less
Please sign in or register to post a reply.