(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

@windwalker

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

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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.

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@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.

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@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.

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@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.

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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.

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@auntnanny

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

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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

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@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.

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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

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

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@auntnanny

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

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You can most likely get the pho numbers of the Mayo websites — for all three locations. One is in Arizona. I use the one in Rochester

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@yayaaz

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

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Hi @yayaaz, per @auntnanny's suggestion, here is a link to the Mayo Clinic Pharmacies page where you can find the contact information she was referencing: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/pharmacies

Liked by tdrell

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@ethanmcconkey

Hi @yayaaz, per @auntnanny's suggestion, here is a link to the Mayo Clinic Pharmacies page where you can find the contact information she was referencing: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/pharmacies

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Thank you very much! As always, I can count on this forum to help me help my aunt!

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@auntnanny

You can most likely get the pho numbers of the Mayo websites — for all three locations. One is in Arizona. I use the one in Rochester

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Thank you,
I feel foolish because it was so obvious and I didn’t think of it.

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@yayaaz

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

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Yayazz. I just received a full pamphlet from my pulmonologist about Arikayce. It is used with a nebulizer system called Lamira Nebulizer System. At the start of treatment they send 2 shipments of a 28 day supply of Arikayce and the nebulizer. Going forward they send monthly shipments of the 28 day supply of the Aricayce. It has to come from a specialty pharmacy and you can go to ARICAYCE. com/ instructions to watch a step by step video on how to use the nebulizer. The drug is a liposomal suspension. It does have some noteworthy side effects and I would imagine that you have to be monitored quite closely while you are taking it. I hope this helped.

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@chinasmom

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.

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@chinasmom Hello. I had a full panel of genetic testing done at Mayo in 2016 when they feared I may need a double lung transplant. They had to be sure I was totally healthy enough to go through with it. I was CF negative and cancer negative. l am not sure of all that I was tested for, but the tests did show every single thing I have been exposed to in my life due to the antibodies they found. I was surprised at some of the findings. For example, it showed I had been exposed to Hep C, yet I do not actually have it. I know who exposed it to me; my fiancée when I was 21. I also had Epstein Barr, which I never knew I had had mono. And a few other minor things. It was amazing to me that your entire health history can be traced with testing. Why are you interested in having a genetic work-up? Are you suspecting anything in particular?

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@windwalker

@chinasmom Hello. I had a full panel of genetic testing done at Mayo in 2016 when they feared I may need a double lung transplant. They had to be sure I was totally healthy enough to go through with it. I was CF negative and cancer negative. l am not sure of all that I was tested for, but the tests did show every single thing I have been exposed to in my life due to the antibodies they found. I was surprised at some of the findings. For example, it showed I had been exposed to Hep C, yet I do not actually have it. I know who exposed it to me; my fiancée when I was 21. I also had Epstein Barr, which I never knew I had had mono. And a few other minor things. It was amazing to me that your entire health history can be traced with testing. Why are you interested in having a genetic work-up? Are you suspecting anything in particular?

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@windwalker , Thank you for getting back to me so quickly. The DNA Test is an at home one that is from mayo clinic and then sourced out. It was heavily advertised around last Christmas and again at Mother's Day. It was sent directly to my e-mail hence my resent curiosity of the test. It is not something the doctor would order you just buy it at the mayo clinic website for 149.00. I would do it if anyone else had good information from it. I have so many diseases that I'm surprised I don't syndrome after my name. I would welcome any new information thru reliable testing. So I am asking the group if anyone has used this and had received helpful information from it. Thank you so much for your tireless devotion to our group. You really stepped up after we lost our group leader. You are loved and appreciated ♡♡♡
Becky

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@chinasmom, Awe…thank you Becky. I have to say, I love my members right back. Although not funny, I did giggle when you stated you should have the word 'syndrome' following your full name. LOL. It is good to have a sense of humor through all of this. Unfortunately, our disease can come with a number of comorbid diseases;sister diseases that go hand-in-hand with bronchiectasis, or gerd, or mac. Oftentimes it is autoimmune diseases like rheumatic arthritis, lupus, etc. I'd be curious to hear what you learn from your genetic testing. I hope you will share your results.

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I can't tell if pictures came through of my email or not

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