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Sue, Volunteer Mentor (@sueinmn)

Early Christmas gift - stopping the "Big 3"

MAC & Bronchiectasis | Last Active: Jan 29, 2020 | Replies (27)

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Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm such a whooos that I wanted a doctor to tell me to stop. But my wonderful bronchiectasis/ntm specialist pulmonologist left although she had assured me that she would still be at U if Chicago for my January appointment. I have made an appointment with my original pulmonologist who does have a specialty in bronchiectasis but referred me to the ntm one when my sputum turned up positive for MAC. She had not put me on the antibiotics or Arikayce.

I woke up this morning coughing up gobs of mucus which has become much, much worse since I started Arikayce last August. Then straight to the bathroom and pain. I finally started thinking rationally and your situation really helped. Thank you so much for sharing!

On Dec 3, I saw a report in mychart about my Oct sputum sample. I had seen good reports from samples since the summer but this one said: culture: no growth for 45 days. Final report. (I think that means they are finished looking at it because there is nothing there!)

What is the worse thing that can happen if I stop? The organisms will come back sooner then if I complete the protocol. I can deal with that if and when it happens.What is the best thing that can happen? The antibiotics are causing my worsening bowel issues and the Arikayce is causing my worsening mucus/breathing issues and I will be able to get my life back.

Tonight will be the first Friday that I will not be taking azithromycin and ethambutol since March.

I'm with you these holidays, Sue. Thank you!

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Replies to "Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm..."

@rits, I would discuss this decision with your dr before just willy-nilly stopping your meds. Stopping too soon could cause the mac to morph into one that is resistant to the drug you were just on. Then, if/when it returns, that med may no longer work for you. You may want to talk to your dr about taking maintenance antibiotics, like 10 day a month type. That is the regimen I am on and it keeps the cooties away.

@rits I also want to point out that I nebulize tobramycin for 28 days every other month. It always starts out as an unpleasant experience. For the first two weeks, it causes me to cough my head off and lots of stuff comes up. It makes my lungs feel wet and uncomfortable, it changed my clear sputem green (probably from bringing things up from deeper down) Yesterday was the first day that the sputem came up clear. I will feel great by the end of this treatment. My point is; treatments may not be fun but are neccessary. Of course, you know your body better than anybody, and it may be better for you to quit your meds. I quit ALL of mine for two months last year. I told my dr about it and he laughed and said "Everybody takes a vacation from their meds at some point, and that is ok, just not as long as two months." He said " You do not want to take one step forward, and two steps back." Two months off put me at risk of undoing all of my previous treatment. Let me know if you do feel better off of your meds. Lots of people with chronic illness get weary of taking all of their meds. It is understandable.

@rits I'm with Terri on this – talk to your docs first – you don't want the infection to come raging back. My ID doc was actually the one who suggested I stop, but 3 months and 6 months ago he was adamant that I continue at least to the 18 month mark. I was on the meds for 18 months – 6 months it was daily.
His philosophy is that since all my other signs are normal, I've been symptom free since August, and I was getting worse gut & fatigue issues, it's time to stop. He says that since MAC is everywhere, a percentage of the population can always test positive for MAC without really being ill, I may be one of them. (Especially since 2 of my siblings always test positive for the related disease of TB even though they don't have an active infection…)
Now he and the pulmonologist will be monitoring me – they are holding Terri's type of treatment "in reserve" – only to be used if I have the MAC flare up and become symptomatic again and then probably after another course of the Big 3.
Good luck, whatever you decide to do.