(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@heathert

@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.

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Thank you for the reply Heather. How long were you on it? Any side effects?

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@heathert

@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.

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@heathert…..How long were you on Arikayce and how long were you on Amikacin before that? Was it hard to get used to all that is involved including cleaning the apparatus daily? I’m starting Arikayce on Monday after initially receiving Amikacin through an IV and then through nebulizing. An instructor is spending two hours on Monday teaching me how to use the new drug. Very interested in hearing what you thought of it, thanks!

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@hydrang3a I was on Amakacin liposomal (inhaled) which is the same as Arikayce, for a year., I had no trouble getting used to the whole process, it was a bit time consuming but worth it to me. I never had the IV Amikacin but I have heard that liposomal is alot easier on the body Thats great that you start on Monday, at first you may lose your voice so make sure you have strepfen lozengers, they are anti-inflam/ antibacterial which goes straight to your throat (it was fantastic for my voice) and rinse your mouth out each time you finish Arikayce, Hope it all goes well for you and dont hesitate to ask anything.

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@jasmine321

Thank you for the reply Heather. How long were you on it? Any side effects?

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Hi @jasmine321 I was on it for a year, great stuff. The only side effects were loss of voice, I used Strepfen lozengers for that.

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@heathert

@hydrang3a I was on Amakacin liposomal (inhaled) which is the same as Arikayce, for a year., I had no trouble getting used to the whole process, it was a bit time consuming but worth it to me. I never had the IV Amikacin but I have heard that liposomal is alot easier on the body Thats great that you start on Monday, at first you may lose your voice so make sure you have strepfen lozengers, they are anti-inflam/ antibacterial which goes straight to your throat (it was fantastic for my voice) and rinse your mouth out each time you finish Arikayce, Hope it all goes well for you and dont hesitate to ask anything.

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I also had a glass of water next to me at first as it can make you cough early on.

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@heathert

Hi @jasmine321 I was on it for a year, great stuff. The only side effects were loss of voice, I used Strepfen lozengers for that.

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Hello @heathert my sputum culture is growing MAC again after being free from it for 7 years. I’m having CTscan next week and will see my pulmonologist the following week. He’s thinking of prescribing the 3 antibiotics for 6 months and also put me on the Amikacin liposomal (inhaled). He might also do brochoscopy depending on the results of the CT scan. We haven’t discussed this newly approved medication, he only mentioned it in passing. I’ll have to talk to him more about it because when I read about it, seems like there are some side effects. I am glad you didn’t experienced any serious side effects.

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@jasmine321

Hello @heathert my sputum culture is growing MAC again after being free from it for 7 years. I’m having CTscan next week and will see my pulmonologist the following week. He’s thinking of prescribing the 3 antibiotics for 6 months and also put me on the Amikacin liposomal (inhaled). He might also do brochoscopy depending on the results of the CT scan. We haven’t discussed this newly approved medication, he only mentioned it in passing. I’ll have to talk to him more about it because when I read about it, seems like there are some side effects. I am glad you didn’t experienced any serious side effects.

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@jasmine321 ….I am curious what criteria your pulmonologist uses to start treatment for NTM. Because my local ID doctors would have rushed to put me on the triple antibiotic meds with one positive culture, my ID doc at NJH saw no indication for treatment. I asked her what I should say to local docs. She said the gold standard to consider Rx is 2 positive sputum cultures and CT scan showing bronchiectasis. Tdrell44

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@jasmine321

Hello @heathert my sputum culture is growing MAC again after being free from it for 7 years. I’m having CTscan next week and will see my pulmonologist the following week. He’s thinking of prescribing the 3 antibiotics for 6 months and also put me on the Amikacin liposomal (inhaled). He might also do brochoscopy depending on the results of the CT scan. We haven’t discussed this newly approved medication, he only mentioned it in passing. I’ll have to talk to him more about it because when I read about it, seems like there are some side effects. I am glad you didn’t experienced any serious side effects.

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@jasmine321 those nasty MAC bugs keep coming back, 7 years is great without them growing. I was told that liposomal had way less side effects than IV. It will be interesting to see what your dr says.

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@heathert

Hi @jasmine321 I was on it for a year, great stuff. The only side effects were loss of voice, I used Strepfen lozengers for that.

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@heathert….thank you for sharing your experience with Arikayce. The Stephen lozengeges Box says don’t use more than 3 days. Also wondering if they conflict with the big 3? When you say loss of voice do you mean you were hoarse or do you mean you could not speak? And for how long?

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@tdrell

@jasmine321 ….I am curious what criteria your pulmonologist uses to start treatment for NTM. Because my local ID doctors would have rushed to put me on the triple antibiotic meds with one positive culture, my ID doc at NJH saw no indication for treatment. I asked her what I should say to local docs. She said the gold standard to consider Rx is 2 positive sputum cultures and CT scan showing bronchiectasis. Tdrell44

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@tdrell I was diagnosed with bronchiectasis and MAC in 2011. Took triple antibiotics for 12 months and was MAC free for 7 years. I saw my pulmonologist last month because I was having more frequent dry coughs plus occasional productive coughs. He ordered sputum culture and AFB. Sputum culture was positive for staph aures. My pulmonologist was on vacation when the results came out so the covering physician ordered Levaquin for 7 days. After Levaquin, I’m back to baseline. Saw my pulmonologist last Friday and he said I have mild MAC. He ordered CT scan because the chest xray done last month looks worse than my chest X-ray 3 years ago. He’ll decide on what to do next when he gets the result of CT scan. For now, I feel a lot better, just occasional dry coughs. He told me to continue with nebulizer twice a day and the flutter valve (acapella -green) daily.

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@hydrang3a I lost my voice completely for a few days and then it could get a bit croaky on and off during the year and that was when I would have a half a strepfen. They are just strepsils with neuofen that only goes to the throat and I had them with the big 3 and they were ok, just check with your dr. Let me know how you go.

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@jasmine321

@tdrell I was diagnosed with bronchiectasis and MAC in 2011. Took triple antibiotics for 12 months and was MAC free for 7 years. I saw my pulmonologist last month because I was having more frequent dry coughs plus occasional productive coughs. He ordered sputum culture and AFB. Sputum culture was positive for staph aures. My pulmonologist was on vacation when the results came out so the covering physician ordered Levaquin for 7 days. After Levaquin, I’m back to baseline. Saw my pulmonologist last Friday and he said I have mild MAC. He ordered CT scan because the chest xray done last month looks worse than my chest X-ray 3 years ago. He’ll decide on what to do next when he gets the result of CT scan. For now, I feel a lot better, just occasional dry coughs. He told me to continue with nebulizer twice a day and the flutter valve (acapella -green) daily.

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Jasmine321sounds like you are in good hands…as was said…7 years clear is awesome…glad you are feeling better. ..we will await your primary Pulmonologists thoughts tdrell

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