1. < MAC & Bronchiectasis

Ending antibiotics for MAC

Posted by lilianna @lilianna, Oct 27 7:35am

How is it with the length of period for taking MAC antibiotics? The protocol calls for 12 months after converting to negative for mac and staying negative throughout the 12 months after converting. Is staying longer better? If you stopped taking antibiotics how did you do it- gradually or just stopped all?

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

suzyqueue | @suzyqueue | Oct 29 10:15pm

I'm so sorry he's having to deal with this. I'll be praying for you both through all of this.

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pacathy | @pacathy | Oct 30 4:53am
In reply to @tconz "I was on the Big 3 for 13 months (with MAC) testing negative the whole time...." + (show)
@tconz

I was on the Big 3 for 13 months (with MAC) testing negative the whole time. After being off meds for only 5 months (which was glorious) I got Aspergillus and Abscessus (which was found during a Bronchoscopy). I was beyond disappointed but they wanted to treat the Aspergillus first and I am into 3 months of a 6 month treatment with Voriconazole. I go back to NJH Nov. 3rd so not sure what they plan to do at this point. I try to stay positive but it does get hard at times.

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jusg to clarify, you said you were on big 3 for 13 months testing negative. I’m guessing you mean the 13 months was after you initial course of the big 3? How long was that?
I’m so sorry about the Aspergillus and Abscessus.

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1 reply
pacathy | @pacathy | Oct 30 5:43am
In reply to @healthme "i am glad to find someone who stayed on meds for keeping Mac under control. if..." + (show)
@healthme

i am glad to find someone who stayed on meds for keeping Mac under control. if you don't mind sharing meds info? I am new to these chat boards. My spouse has MAC for about 14 yrs! He's been on sev. antibiotics almost as long. Also on a probiotic same amount of time. He also has COPD. any info/research or experiences will be appreciated! Bless you all

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Welcome to Mayo Connect. I’m sorry you need to be here, but believe you will find very helpful information from members who have been walking this same road as your husband.

I have bronchiectasis and was thought to have MAC based on CT’s, but went to Mayo and my bronchoscopy results were negative. I’m here to try to keep it that way.

You mentioned that your hubby can’t do the breathing treatments and you weren’t sure about adding water to his lungs. If you’re speaking about the 7% saline, several members, including me, have found Dr McShane’s presentation on on airway clearance quite helpful. It includes good info on advantage of hypertonic saline as well as other airway clearance techniques.
https://m.youtube.com/watch?v=L-EHohMe7II
Note-we can’t provide medical advice since we aren’t providers and can only share our experiences. Hypertonic saline should be used only with advice of docs who know the patient’s medical issues and would be used cautiously, if at all, if a patient has any signs of heart failure.
Please feel free to post questions. Searching the threads also is also helpful. As you see from other posts, there’s a lot of experience here.

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Rick | @rstel7272 | Oct 30 6:56am

All my girls ❤️ have commented on this post so I can chime in. I did 28 months followed by 12 months of the big 3. Now I am in month 23 of voriconazole for aspergillus. My 6cm scar tissue lined cavity has been the same for over 6 years. Seeing a dermatologist today, my skin side effect is quite a "pain"

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tconz | @tconz | Oct 30 7:25am
In reply to @pacathy "jusg to clarify, you said you were on big 3 for 13 months testing negative. I’m..." + (show)
@pacathy

jusg to clarify, you said you were on big 3 for 13 months testing negative. I’m guessing you mean the 13 months was after you initial course of the big 3? How long was that?
I’m so sorry about the Aspergillus and Abscessus.

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The 13 months was on the Big 3 (and Amikacin) while testing negative. The doctors say once you test Negative the clock starts then and if you go a full 12 months Negative then you can get off the Big 3 and Amakacin. During the 13 months of Negative I developed another cavity and they thought it could be Aspergillus but sputum samples did not show that so I had a Bronchoscopy which identified both Aspergillus and Abscessus. The Big 3 and Amikacin do not help with the later 2 infections.

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