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.

lynncat | @lynncat | Sep 19 5:59pm

Oh I see , that makes so much sense. I will try to ease in to it as best as I can :0 I also drink plain KEFIR first thing AM .. and also I dod not understand that most people might have something in the beginning until your body adjusts. I have quit alcohol- which I love - and will stick to coffee and walks until my cough eases up. then I want to go back to pilates..( I hope my cough will ease up? I dont to any airways clearing etc. I spit up naturally ? used to not at all -but over the summer things changed. . I am so glad for this group . I am in Manhattan NY, and so far I think I am in very good hands... I do ask a lot of questions though... Thank you again 🙂

terrimn | @terrimn | Sep 19 6:03pm

In reply to @mjb24 "I have been on Big 3 daily for over a year with few problems. I had..." + (show)

Mary, I'm so glad you're getting through the 4 meds basically unscathed like myself. Especially for the newbies, it's always helpful to hear from people that haven't had such a rough time of this. Thank you and continued well wishes. Terri

Mary | @mjb24 | Sep 20 6:25am

In reply to @lynncat "Thank you so much for your reply.. I had a regular day - aside from orange..." + (show)

@lynncat Yes, it took a little time but I was able to keep working full time and my husband was a help around the house. I did adjust and although I since retired this past June, I keep quite busy. Right now, your body is fighting infection & getting accustomed to the new drugs. Also, it is mentally straining to go through the diagnosis and acceptance of treatment so I think it's natural to experience fatigue and a lack of energy . Hopefully, you will adjust over time and fair well on the meds, like many others on this site. When I was experiencing the nausea, I purchased Sea Band acupressure wristbands and they did help. Your doctor can also give you something for nausea, I just did not want yet another pill going into my body and was able to work through it

Mary | @mjb24 | Sep 20 6:41am

In reply to @lynncat "oh and I forgot - do you take Motrin etc for headaches etc.? I forgot to..." + (show)

I was told not to take NSAIDs, to use Tylenol instead, if needed.

cwal | @cwal | Sep 20 7:04am

In reply to @terrimn "Long read, but here's what works for me. Except for periodic "tired" days, I have zero..." + (show)

That is quite the schedule! How long have you been taking the Big 3 plus inhaled Amikacin? I'm guessing longer than 6 months since you are on the inhaled Amikacin as well.

fran22 | @fran22 | Sep 20 10:50am

Hi, so thankful to have found this group. Was diagnosed a year ago with bronchiectasis, ntm and now abscesses. Beginning 5 antibiotics. Just wondering if anyone bought an air purifier and recommends it, also a sterilizer for my nebulizer and aerobika. Tired of boiling water.
Thank you, this is so overwhelming.

pacathy | @pacathy | Sep 20 11:56am

In reply to @fran22 "Hi, so thankful to have found this group. Was diagnosed a year ago with bronchiectasis, ntm..." + (show)

I do have an air purifier with hepa filter because I have a couple severe allergies to pollen and have mild asthma. I use it a lot when pollen counts are high. I also have young grandchildren and use it when they come over after the upper respiratory illnesses start at their schools. It's just a room sized one.
I use the Bololo bottle sterilizer and love it for the ease and storage between use.

irene5 Irene Estes | @irene5 | Sep 20 12:11pm

In reply to @rmoore901 "Interesting you are starting all 3 at the same time. When I started the big daily..." + (show)

It is interesting how so many doctors have different protocol. When I started on the meds back in 2016 I was on the three of them every day of my life!! May I tell you that was quickly put at three day a week , but never one at a time. Irene5

fran22 | @fran22 | Sep 20 1:26pm

In reply to @pacathy "I do have an air purifier with hepa filter because I have a couple severe allergies..." + (show)

Thank you for your response. Do you sterilize your equipment after each use? I was sterilizing one day a week and rinsing everyday in boiled water. I use my nebulizer and aerobika 2x a day.

pacathy | @pacathy | Sep 20 2:54pm

I have a more dry bronchiectasis with little sputum, so I nebulize just daily with doc's ok. I do medicated saline nasal wash, usually twice daily. I run the Bololo 4-5x/week and use microwave steamer bags (also for baby things) the other days and for night nasal rinse bottle.
People read different ideas and figure out their system and there are a few good options. I'm happy with this now-it's quick. If sputum increases, I'll neb more and use Bololo daily..

The main thing is to keep equipment clean and avoid development of biofilms and there are different ways to achieve that. Good luck!

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