(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.

anniepie | @anniepie | Jan 31, 2021

In reply to @heathert "Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand..." + (show)

Thanks @heathert -- very much.
Annie x

anniepie | @anniepie | Feb 5, 2021

In reply to @heathert "Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand..." + (show)

Hi Heather @heathert thaks so much -- I do have some other Arikayce questions.

No I'm not able to get Aricayce in Australia -- it hasn't been approved here yet or in many other places either yet. But I've recently been approved to be part of the international Arikayce trial, which is continuing over a longer period of time.

(My lung specialist is a co-author on this international trial's published articles -- Prof Rachel Thomson. They've already published the main efficacy results I think. It seems that this current part of the trial is the broader NTM patient testing phase).

I have to wait for the drug and the inhaler system to arrive here from the USA -- I think it has to be a PARI system

I think you were part of an earlier phase of the trial -- possible the main efficacy testing part.

Question: Did the Arikayce trial people supply you with your PARI e-flow rapid inhaler machine, or did you buy it yourself ? (I'm wondering if the trial people use a slower PARI system than the e-flow rapid). Your rapid system sounds much better to use.

Thanks very much for all your help
Annie x

irene5 Irene Estes | @irene5 | Feb 5, 2021

In reply to @anniepie "Hi Heather @heathert thaks so much -- I do have some other Arikayce questions. No I'm..." + (show)

@anniepie This is Irene. I am part of the Arikayce clinical trial in the US . I started on June 8, 2020. The Panther Pharmaceutical Company supplies everything. Yes, it is a Pari e flow. You are also provided with a virtual nurse for an intensive lesson/training. There is no cost to you except for buying distilled water for sterilization. The Arikayce support is genuine and will answer any and all questions that may arise. Every month when my Medicare print out arrives, and I see almost $11,000, I am grateful to be in this trial. Good luck to you. @irene5

heathert | @heathert | Feb 5, 2021

In reply to @anniepie "Hi Heather @heathert thaks so much -- I do have some other Arikayce questions. No I'm..." + (show)

Hi @anniepie Yes the trail included a pari E flow, a fantistic machine which delivers the med quicker, but I had to give it back at the end and buy my own, for my saline use. I may have to use Arikace again if my drugs do not work this time, wonder if I can be in the trial a second time as New Zealand has not approved it yet also , and it is not cheap! All the best Heather

heathert | @heathert | Feb 5, 2021

In reply to @irene5 "@anniepie This is Irene. I am part of the Arikayce clinical trial in the US ...." + (show)

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

janrn1 | @janrn1 | Feb 5, 2021

How do you the difference between your MAC acting up or a COPD exacerbation? Please help!!

Sue, Volunteer Mentor | @sueinmn | Feb 5, 2021

In reply to @janrn1 "How do you the difference between your MAC acting up or a COPD exacerbation? Please help!!" + (show)

That's a very tough question. Here is how I judge - if my sputum turns yellow, green or brownish, it's not asthma or Bronchiectasis. If I have a fever I suspect MAC or another infection. If it's chest pain, increased coughing or shortness of breath, I trynall the tools in my asthma/bronch toolbox, and if they don't help, I call the doc.
For example, two weeks ago I had a pain in my lung, especially with ANY exertion. Before I assumed it was MAC rearing its ugly head, I added an additional dose of my levalbuterol inhaler every morning with my Bronchiectasis inhaler. Opening the airways before the second inhaler made it more effective, and after a few days the pain went away. Still short of breath when chasing with the grands but not the pain.

Side note: wearing my facemask when out in the cold has kept me from cold-induced asthma attacks.
Sue

anniepie | @anniepie | Feb 5, 2021

In reply to @irene5 "@anniepie This is Irene. I am part of the Arikayce clinical trial in the US ...." + (show)

Oh wow! Irene @irene5 that is a huge cost each month.

In March I will ask my lung doctor (who is a co-author on this trial) if she knows what the timeline is likely to be for FDA approval. (And for the TGA in Australia). Drugs usually go down in price after approval and eligibility improves.

Oh I wish they would hurry up and support Aricayce better soon for when you need the drug again in future!

Heather @heathert can I ask if you know what the cost would be in New Zealand ?

Hugs to you both
Annie

anniepie | @anniepie | Feb 5, 2021

In reply to @heathert "Hi @anniepie Yes the trail included a pari E flow, a fantistic machine which delivers the..." + (show)

Thanks very much for this info Heather @heathert (and Irene @irene5 too).

heathert | @heathert | Feb 6, 2021

In reply to @anniepie "Oh wow! Irene @irene5 that is a huge cost each month. In March I will ask..." + (show)

@anniepie Thanks Annie, I have no idea how much it will cost, I will only need it if the big 3 fail. It is very expensive tho, scary! Hugs Heather

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