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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

bnthorson | @bnthorson | May 27, 2021
In reply to @anniepie "Thanks for your reply @bnthorson. Yes the Clofazimine suntan, laugh -- glad it is only that..." + (show)
@anniepie

Thanks for your reply @bnthorson. Yes the Clofazimine suntan, laugh -- glad it is only that on my skin too.
I've been on Clofazimine for around 18 months now. The teeth stain has begun to be more noticeable in the past 6 months,
I think I will get a new mouth/teeth mold made so I can use special whitening crean from my dentist -- it's worth a try. I will let you know how it goes.
(PS. It's a good idea to get an ECG / EKG of your heart rhythms after taking Clofazimine for around 12 months, It gets rid of potassium and magnesium from the body and that affects some people's QT heart rhythm).
Good luck

Jump to this post

Thx for your input. I have blood work and ekgs every month while on all these meds.
I’ll be interested to hear if the cream works. Does the Clofazimine affect your appetite and digestion? I have lost 5 lbs since I started taking it, on top of the 13 I lost when my MAC raised its ugly head again a year ago.

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1 reply
janeta | @janeta | May 27, 2021
In reply to @bnthorson "I use albuterol in my inhaler and 3% saline in my nebulizer 2x day . I..." + (show)
@bnthorson

I use albuterol in my inhaler and 3% saline in my nebulizer 2x day . I also use the vest twice daily after the nebulizer and inhaler. Don’t know why I am only using the lower percentage of saline. I will ask my pulmonologist when I see him next week.

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Ah ok. So only saline in the neb. I do see a lot of people just using the saline in their nebs. I'm a bit puzzled why Albuterol isn't added to the neb to aid in getting the Albuterol deeper into the lungs. Many times, the Albuterol via neb is more effective than Albuterol via inhaler. One's lung function, per PFT, would determine that. Thanks for responding .... I'm learning a lot about what med regimens people are taking. 🙂

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | May 27, 2021
In reply to @janeta "Ah ok. So only saline in the neb. I do see a lot of people just..." + (show)
@janeta

Ah ok. So only saline in the neb. I do see a lot of people just using the saline in their nebs. I'm a bit puzzled why Albuterol isn't added to the neb to aid in getting the Albuterol deeper into the lungs. Many times, the Albuterol via neb is more effective than Albuterol via inhaler. One's lung function, per PFT, would determine that. Thanks for responding .... I'm learning a lot about what med regimens people are taking. 🙂

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If I need the albuterol (levalbuterol in my case) I use it before the saline to get the saline deeper into my lungs. If I am diligent with the saline, I need less levalbuterol - in either form.
Sue

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bnthorson | @bnthorson | May 27, 2021
In reply to @janeta "Ah ok. So only saline in the neb. I do see a lot of people just..." + (show)
@janeta

Ah ok. So only saline in the neb. I do see a lot of people just using the saline in their nebs. I'm a bit puzzled why Albuterol isn't added to the neb to aid in getting the Albuterol deeper into the lungs. Many times, the Albuterol via neb is more effective than Albuterol via inhaler. One's lung function, per PFT, would determine that. Thanks for responding .... I'm learning a lot about what med regimens people are taking. 🙂

Jump to this post

That’s so interesting. I meet with my infectious disease doctor next week, I will ask him. My PFT is surprisingly normal. But the minute I do anything, I get breathless. I’m also going to ask about the % of saline.
Thank you so much for your input!

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anniepie | @anniepie | Jun 1, 2021
In reply to @bnthorson "Thx for your input. I have blood work and ekgs every month while on all these..." + (show)
@bnthorson

Thx for your input. I have blood work and ekgs every month while on all these meds.
I’ll be interested to hear if the cream works. Does the Clofazimine affect your appetite and digestion? I have lost 5 lbs since I started taking it, on top of the 13 I lost when my MAC raised its ugly head again a year ago.

Jump to this post

Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The Clofazimine hasn't made a big difference to my digestion really, but it has affected my bowel a bit. The Azithromycin seems to have affected my digestion more, and it gives me more bloating / swollen belly.
The Clofazimine tooth staining is much more than I had with Rifampin. It only really happened after a year on the drug -- but it may not happen at all for you.
How long did you go before the MAC came back? (Oh this disease and the drugs we have to take! I wish I could fix it for all of us)

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2 replies
bnthorson | @bnthorson | Jun 1, 2021
In reply to @anniepie "Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The..." + (show)
@anniepie

Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The Clofazimine hasn't made a big difference to my digestion really, but it has affected my bowel a bit. The Azithromycin seems to have affected my digestion more, and it gives me more bloating / swollen belly.
The Clofazimine tooth staining is much more than I had with Rifampin. It only really happened after a year on the drug -- but it may not happen at all for you.
How long did you go before the MAC came back? (Oh this disease and the drugs we have to take! I wish I could fix it for all of us)

Jump to this post

My first positive biopsy was 2002, I was a symptomatic. Got sick in 2005, medicated 2 years. 5years later , 2012, again symptomatic and medicated for 18 months. Had pneumonia and other infections in between. Had positive sputum Jan 2019, but minimal symptoms. July 2020 symptoms returned along with another strain of MAC, MRSA, and aspergillus. So that was 6 years. During those breaks I felt very good! Started MAC meds in August 2020. I am not feeling as well as I did the last two times at all, but I am that much older too. My breathing, fatigue, lethargy and significant weight loss are new to me. Due to have a bronchoscopy in the fall.
Thank You for all the info in your experience and knowledge, it is very helpful. I had no support my first two rounds.
Take care

REPLY
1 reply
anniepie | @anniepie | Jun 1, 2021
In reply to @anniepie "Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The..." + (show)
@anniepie

Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The Clofazimine hasn't made a big difference to my digestion really, but it has affected my bowel a bit. The Azithromycin seems to have affected my digestion more, and it gives me more bloating / swollen belly.
The Clofazimine tooth staining is much more than I had with Rifampin. It only really happened after a year on the drug -- but it may not happen at all for you.
How long did you go before the MAC came back? (Oh this disease and the drugs we have to take! I wish I could fix it for all of us)

Jump to this post

Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem side effects, I'm very sorry about that,
I had a full hearing test again today, and unfortunately my hearing has deteriorated since I started Arikayce. I thought so -- the tinnitus has increased, But I feel like I'm sort of '"trading off" a bit of my hearing in the hope that Arikayce will help kill this bug,
The Arikayce does feel like it is doing something -- my lungs sure feel worse! I hope it knocks out this bug.
I see my pulm doctor in 3 weeks -- don't know where we'll go from here.
Irene @irene5 I hope the Arikayce is still going okay for you.
And thanks Heather @heathert for being there for me!
Hugs to all of you, from Annie

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3 replies
anniepie | @anniepie | Jun 1, 2021
In reply to @bnthorson "My first positive biopsy was 2002, I was a symptomatic. Got sick in 2005, medicated 2..." + (show)
@bnthorson

My first positive biopsy was 2002, I was a symptomatic. Got sick in 2005, medicated 2 years. 5years later , 2012, again symptomatic and medicated for 18 months. Had pneumonia and other infections in between. Had positive sputum Jan 2019, but minimal symptoms. July 2020 symptoms returned along with another strain of MAC, MRSA, and aspergillus. So that was 6 years. During those breaks I felt very good! Started MAC meds in August 2020. I am not feeling as well as I did the last two times at all, but I am that much older too. My breathing, fatigue, lethargy and significant weight loss are new to me. Due to have a bronchoscopy in the fall.
Thank You for all the info in your experience and knowledge, it is very helpful. I had no support my first two rounds.
Take care

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Oh wow - you've had a rough time @bnthorson .
Yes the fatigue and lethargy are something else!!! I was almost bedridden for more than 2 years, But I'm pacing myself back into the world with the help of a physiotherapist -- and anyone else I can get some help from.
You've got support from me bn (sorry don't know your first name) -- and many people on this site are a really wonderful help
Annie

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goatlady | @goatlady | Jun 1, 2021
In reply to @anniepie "Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem..." + (show)
@anniepie

Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem side effects, I'm very sorry about that,
I had a full hearing test again today, and unfortunately my hearing has deteriorated since I started Arikayce. I thought so -- the tinnitus has increased, But I feel like I'm sort of '"trading off" a bit of my hearing in the hope that Arikayce will help kill this bug,
The Arikayce does feel like it is doing something -- my lungs sure feel worse! I hope it knocks out this bug.
I see my pulm doctor in 3 weeks -- don't know where we'll go from here.
Irene @irene5 I hope the Arikayce is still going okay for you.
And thanks Heather @heathert for being there for me!
Hugs to all of you, from Annie

Jump to this post

I also had bad diarrhea from it, it was kind of a two fold thing. I just didn't feel good on it. The tinnitus was almost deafening. Unfortunately, for me it was a bad experience. I was so hopeful that this would work for me. I have heard that it works wonders for other people. I am glad you are experiencing some benefits! That is wonderful!! I am still back at Square One, still on the BIG 3.

Diane (aka GoatLady!)

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1 reply
heathert | @heathert | Jun 1, 2021
In reply to @anniepie "Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem..." + (show)
@anniepie

Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem side effects, I'm very sorry about that,
I had a full hearing test again today, and unfortunately my hearing has deteriorated since I started Arikayce. I thought so -- the tinnitus has increased, But I feel like I'm sort of '"trading off" a bit of my hearing in the hope that Arikayce will help kill this bug,
The Arikayce does feel like it is doing something -- my lungs sure feel worse! I hope it knocks out this bug.
I see my pulm doctor in 3 weeks -- don't know where we'll go from here.
Irene @irene5 I hope the Arikayce is still going okay for you.
And thanks Heather @heathert for being there for me!
Hugs to all of you, from Annie

Jump to this post

@anniepie @bnthorson @goatlady The big 3 antibiotics also cause hearing loss and tinnitis, I did not know that Arakayce also caused this. My hearing loss was from the big 3 unfortunatly. take care Heather

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