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.

auntnanny | @auntnanny | May 8, 2019

sounder27 ……. thanks so much for your newsy post.

REPLY
heathert | @heathert | May 8, 2019
In reply to @sounder27 "Auntnanny. Saw my doc today. Asked him about Toby and he said it was made to..." + (show)
@sounder27

Auntnanny. Saw my doc today. Asked him about Toby and he said it was made to target pseudomonas rather than Mac. He gave me a pamphlet about an inhaled antibiotic called Arikayce, a liposomal form of the antibiotic amikacin. He is ordering me a bebulizer with saline and said to continue using the Resprivest morning and evening. This is time consuming when I need to be at work early in the morning. I have also ordered the broncolin/propolis cough syrup which is due to arrive in 2 days. I am to consider the risks of the Arikayce and let my doc know if I want to try it. It can cause allergic inflammation of the lungs and hemoptysis which can be “common” side effects.

Jump to this post

@sounder27 Hi, I was in the trial for Arakarice for a year and it was great , It really knocked my MAC back, only side effect was loss of voice which was sorted with Strepfen loengers , rinsing mouth after inhalation and inhaling just before bed so I diddnt talk after till morning. All the best Heather

REPLY
1 reply
sounder27 | @sounder27 | May 8, 2019
In reply to @heathert "@sounder27 Hi, I was in the trial for Arakarice for a year and it was great..." + (show)
@heathert

@sounder27 Hi, I was in the trial for Arakarice for a year and it was great , It really knocked my MAC back, only side effect was loss of voice which was sorted with Strepfen loengers , rinsing mouth after inhalation and inhaling just before bed so I diddnt talk after till morning. All the best Heather

Jump to this post

Heathert. Did you have any side effects??? Also, did you take it in conjunction with the big 3 as they suggest? Did it get rid of your MAC?

REPLY
heathert | @heathert | May 8, 2019

Hi @sounder27 I only had loss of voice for a few days at the beginning, so I stopped for a few days, sucked Strepfen, inhaled last thing at night. I think my throat would get a bit funny occasionally but not bad at all. I took it with the big 3. It helped reduce my MAC.

REPLY
chinasmom | @chinasmom | May 9, 2019
In reply to @windwalker "@auntnanny and @sounder27 Seeing Mayo team of drs is an excellent idea. That was great advise..." + (show)
@windwalker

@auntnanny and @sounder27 Seeing Mayo team of drs is an excellent idea. That was great advise Jan.

Jump to this post

It has been a awhile since I posted anything but still reading all the emails from the sidelines. Wondering if anyone has used the mayo clinics genetic testing and was it helpful. I am thinking about getting one.
But Money is tight.

REPLY
1 reply
angiejohnson | @angiejohnson | May 9, 2019
In reply to @sounder27 "Windwalker auntnanny. My doc talked to me today about an inhaled drug/ antibiotic called Arikayce. Have..." + (show)
@sounder27

Windwalker auntnanny. My doc talked to me today about an inhaled drug/ antibiotic called Arikayce. Have you heard of it? It is a liposomal form of the antibiotic Amikan. It targets MAC specifically and is a liposomal inhalation suspension. Side effects seem daunting however.

Jump to this post

@sounder27
I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced on chest CT. I had a lobectomy 4 weeks ago to get rid of the majority of the disease and damage from it. I have only had loss of voice as a side effect.

REPLY
2 replies
sounder27 | @sounder27 | May 9, 2019
In reply to @angiejohnson "@Sounder27 I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced..." + (show)
@angiejohnson

@sounder27
I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced on chest CT. I had a lobectomy 4 weeks ago to get rid of the majority of the disease and damage from it. I have only had loss of voice as a side effect.

Jump to this post

Thank you so very much for your info. I was concerned about the side effects, but I am thinking that it may be worth a try.

REPLY
yayaaz | @yayaaz | May 10, 2019
In reply to @auntnanny "sounder27 …… I've heard of it but know nothing about it. Please report back if you..." + (show)
@auntnanny

sounder27 …… I've heard of it but know nothing about it. Please report back if you give it a try.

Jump to this post

ARIKAYCE
The first and only FDA-approved medication for the treatment of refractory (difficult to treat) Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug treatment plan

My aunt can’t get this drug from her pharmacy in Manhattan. Do you know of anyone taking it, and how I can find out where to get it for her. I live in AZ, so I don’t know places in Manhattan. Thank you

REPLY
yayaaz | @yayaaz | May 10, 2019
In reply to @angiejohnson "@Sounder27 I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced..." + (show)
@angiejohnson

@sounder27
I have been on Arikayce since Jan 14. It has dramatically reduced my MAC, evidenced on chest CT. I had a lobectomy 4 weeks ago to get rid of the majority of the disease and damage from it. I have only had loss of voice as a side effect.

Jump to this post

Were you able to get Arikayce from your pharmacy? My aunt is having difficulty getting the drug. The 2 pharmacies close to don’t have it and can’t get it. She is 89, and can’t travel far to get the medication. Is it possible to order the drug through the pharmacy?
Thank you

REPLY
2 replies
auntnanny | @auntnanny | May 10, 2019

yayaaz..…… I would recommend calling the Mayo Pharmacies --- I'm sure they can do it. And, they will mail to your address.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.