1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

irene5 Irene Estes | @irene5 | Feb 7, 2021
In reply to @heathert "@irene5 wow that is alot of money for a month!!!!!!" + (show)
@heathert

@irene5 wow that is alot of money for a month!!!!!!

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@heathert Yes- a crazy lot of money. When I came up for renewal a month ago I just about dropped my teeth when the lady told me it was that amount out of pocket . I said , “Well forget that. I can’t be in the “ trial “ any longer. “ She immediately reconnected me with the people who cover it, and I was approved within five minutes . Then I could breathe easy ( well relatively speaking) after that. Irene

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heathert | @heathert | Feb 7, 2021

@irene,Thanks for that, I might need it again soon too. Are you able to tell me who is paying for yours, may they pay for me too or is it just a USA thing. We have cyctic fibrosis patients paying big money for their treatment with trifecta and the government will not pay for it although it is fantastic for them, so sad..Thanks Heather

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1 reply
irene5 Irene Estes | @irene5 | Feb 7, 2021
In reply to @heathert "@irene,Thanks for that, I might need it again soon too. Are you able to tell me..." + (show)
@heathert

@irene,Thanks for that, I might need it again soon too. Are you able to tell me who is paying for yours, may they pay for me too or is it just a USA thing. We have cyctic fibrosis patients paying big money for their treatment with trifecta and the government will not pay for it although it is fantastic for them, so sad..Thanks Heather

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@heathert. Because there is no way on God’s green earth I could afford the Arikayce, ( we are rich in children only), my infectious disease doctor got me into the clinical trial ( phase 3). When I spoke with the Arikayce people ( they set everything up), they suggested I apply for assistance through The Assistance Fund . The long name is the Nontuberculous Mycobacterial Lung Disease Copay Assistance Program. Financial assistance is provided on a calendar year basis so you have to reapply, but they called me to remind me. What the program does is to provide assistance to cover all or part of the out of pocket cost of the Arikayce. I am so happy to have that assistance Heather. They also cover other supported medications.I wonder if they would cover the cystic fibrosis one. If you have any other questions don’t hesitate to ask me. Irene

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heathert | @heathert | Feb 8, 2021

@irene thank you so much for this information, I will look into it, could be a life saver. Thanks Heather

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jr2366 (Jennifer) | @jr2366 | Feb 8, 2021
In reply to @anniepie "Oh no, back on the NTM meds! I really hoped the Arikayce would clear you up..." + (show)
@anniepie

Oh no, back on the NTM meds! I really hoped the Arikayce would clear you up for longer. But I guess it's all just 'pot-luck' really, as we say in Australia.
Are you on them every day again?
I've been put back on the drugs at 3 days per week instead of every day. I'm not on Rifampicin because it caused havoc for me for a year and interacts with too many other meds I need to take.
I'm on Clofazimine instead, with Ethambutol and only half a tablet of Azithromycin -- 250mg. Unfortunately both Clofazimine and Azithromycin have been known to cause Long QT, so it's a bit of a double-whammy for me.
My Cardiologist says it's inevitable that I will get risky Long QT intervals again while on these 2 meds -- but there's not much choice really. Just have to watch it, and stop the meds again when it happens.
Yes please keep an eye on it with monthly ECGs, Heather.
We really ARE in this together
Hugs from Annie

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Hi Annie can I ask you a question we’re you just on Arikayce alone because I’m on that now and was wondering what happened with you? You were off for little time and it came back the MAC?

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1 reply
lorifilipek | @lorifilipek | Feb 8, 2021

Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused by nontuberculous mycobacteria, CT scans at treatment’s end can accurately predict infection recurrence, a study found. Specifically, CT scores for bronchiectasis and lung nodules were independent predictors of recurrence." https://bronchiectasisnewstoday.com/2021/02/05/ct-scores-for-bronchiectasis-nodules-predict-ntm-recurrence-study-finds/

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4 replies
poodledoc | @poodledoc | Feb 8, 2021
In reply to @lorifilipek "Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused..." + (show)
@lorifilipek

Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused by nontuberculous mycobacteria, CT scans at treatment’s end can accurately predict infection recurrence, a study found. Specifically, CT scores for bronchiectasis and lung nodules were independent predictors of recurrence." https://bronchiectasisnewstoday.com/2021/02/05/ct-scores-for-bronchiectasis-nodules-predict-ntm-recurrence-study-finds/

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@lorifilipek Lori, Funny I was just getting ready to post this same article. Looks like follow up CT scans are very important.

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1 reply
cmi | @cmi | Feb 8, 2021
In reply to @lorifilipek "Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused..." + (show)
@lorifilipek

Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused by nontuberculous mycobacteria, CT scans at treatment’s end can accurately predict infection recurrence, a study found. Specifically, CT scores for bronchiectasis and lung nodules were independent predictors of recurrence." https://bronchiectasisnewstoday.com/2021/02/05/ct-scores-for-bronchiectasis-nodules-predict-ntm-recurrence-study-finds/

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Good find! Thank you.

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heathert | @heathert | Feb 8, 2021
In reply to @lorifilipek "Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused..." + (show)
@lorifilipek

Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused by nontuberculous mycobacteria, CT scans at treatment’s end can accurately predict infection recurrence, a study found. Specifically, CT scores for bronchiectasis and lung nodules were independent predictors of recurrence." https://bronchiectasisnewstoday.com/2021/02/05/ct-scores-for-bronchiectasis-nodules-predict-ntm-recurrence-study-finds/

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@lorifilipek thanks for that, have forwarded on to my specialist. Heather

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anniepie | @anniepie | Feb 8, 2021
In reply to @lorifilipek "Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused..." + (show)
@lorifilipek

Hi all, Have you seen this article? " In patients successfully treated for pulmonary disease caused by nontuberculous mycobacteria, CT scans at treatment’s end can accurately predict infection recurrence, a study found. Specifically, CT scores for bronchiectasis and lung nodules were independent predictors of recurrence." https://bronchiectasisnewstoday.com/2021/02/05/ct-scores-for-bronchiectasis-nodules-predict-ntm-recurrence-study-finds/

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Hi Lori @lorifilipek thanks very much for this Bronchiectasis News article.
(For anyone who wants to 'see the numbers' -- LOL -- the original article this news report came from is really worth a read also: https://www.mdpi.com/2077-0383/10/2/172/htm ).
Thanks to all you wonderful people helping each other.
Hugs (virtual of course) from Annie

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