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.

heathert | @heathert | Jan 29, 2021
In reply to @anniepie "Hi Heather @heathert. I really hope things are going okay for you and your family --..." + (show)
@anniepie

Hi Heather @heathert. I really hope things are going okay for you and your family -- what a time we live in !

I've been approved to get the Arikayce and I'm now just waiting to get the meds and equipment from the USA. I've also ordered some Strepfen online (we don't have it in Australian pharmacies)

I have some Arikayce questions for you if that's okay: How often did you take a Strepfen lozenge -- was it every day? Several times a day? Mostly only for the first few weeks? Or all the time you were treated with Arikayce?

(Strepfen contains a relative of Ibuprofen -- unfortunately these drugs interact with my heart meds and can reduce the effect of one of the heart drugs I need, so I will have to try juggling the times I take it etc. What a bummer!)

Hugs, Annie

Jump to this post

Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand does not have Arikayce since the trial and so it is not funded yet, Do you have to pay for it in Aussie. I would have to pay full price.

You only need 1 or even half a strepfen if you need it (husky voice or sore throat) mostly for the first few weeks and occasionally the first few months after the Arikayce nebulising. Also after nebulising rinse and gargle with water, that helps your throat also. I had Arikayce just before bed so I diddnt have to talk until the morning and strain my throat.

Sorry they interact with your other meds, I hope you can get it sorted out.

Any other Questions do not hesitate to ask.

Take care
Heather

REPLY
3 replies
irene5 Irene Estes | @irene5 | Jan 29, 2021
In reply to @anniepie "Hi Heather @heathert. I really hope things are going okay for you and your family --..." + (show)
@anniepie

Hi Heather @heathert. I really hope things are going okay for you and your family -- what a time we live in !

I've been approved to get the Arikayce and I'm now just waiting to get the meds and equipment from the USA. I've also ordered some Strepfen online (we don't have it in Australian pharmacies)

I have some Arikayce questions for you if that's okay: How often did you take a Strepfen lozenge -- was it every day? Several times a day? Mostly only for the first few weeks? Or all the time you were treated with Arikayce?

(Strepfen contains a relative of Ibuprofen -- unfortunately these drugs interact with my heart meds and can reduce the effect of one of the heart drugs I need, so I will have to try juggling the times I take it etc. What a bummer!)

Hugs, Annie

Jump to this post

@anniepie This is Irene - I do not use Strepfen only because I have been unable to get them. I use Riccola ( singing that now), and they have worked for my throat after Arikayce. Good luck to you.

REPLY
1 reply
cmi | @cmi | Jan 29, 2021
In reply to @anniepie "Hi Regina @cmi -- yes I wrote to them at BeyondAir also. To get into this..." + (show)
@anniepie

Hi Regina @cmi -- yes I wrote to them at BeyondAir also.

To get into this trial you need to meet a bunch of criteria -- but the main one is that you have 'refractory' NTM disease.....that means the drugs have not been successful for you after 2 or 3 years of taking them.

It's a multi-location trial. In some locations they are more advanced with recruitment of NTM patients than others. Brisbane, Australia where I live is one of the trial sites.

Basically, the trial aims to test whether taking the nitric oxide treatment with your standard NTM drugs can help to increase the number of people who seroconvert. So it's really an augmentation of existing NTM treatment.

I emailed the trial coordinator, and talked with the trial nurse and my doctor who is co-researching on this trial. Unfortunately -- although so far I do have refractory MAI -- I'm not eligible for other reasons. (The things that rule me out of the trial are: the Nitric Oxide might potentially affect my heart drugs, and I cannot produce quarterly sputum to test -- I need to have a bronchoscopy to test for continued NTM infection).

But other people in this group, who live in the locations where this trial is being held, might have better luck getting in to it.
Annie

Jump to this post

Thank you Annie. You provided me with good information. I did not hear back from Beyond Air, but you certainly have hit the pause button for me now. I am early arriving to this scene, just diagnosed 4 months ago and on the meds for 2 of those. So, I see that I would have a long period...to qualify...and truly, I pray I don’t. I am holding onto hope that I will convert within the 18 month plan. So I will shelve the NO option.
I did read up on the NAC adjunct to therapy; have ordered the supplement and will discuss with my ID doc at February visit...I would like to take the amino acids. I am just not sure of dose...some research documents 2400 mg OD w meds. With no conclusive studies to support claims, I am tentative. On the other hand, I have always taken amino acids as supplements in my daily wellness routine (Lysine).
I do appreciate all the support and suggestions from this group. You continue to be strong and safe.
Regina

REPLY
cmi | @cmi | Jan 29, 2021
In reply to @bolso1 "Hi cmi, We have been studying bacteriophages as a potentially valuable therapeutic agent. Bacteriophages or phages..." + (show)
@bolso1

Hi cmi,
We have been studying bacteriophages as a potentially valuable therapeutic agent. Bacteriophages or phages - as they are commonly known - are not new. You can read about their history and current research in the attached papers.
The University of California San Diego's School of Medicine has a Center for Innovative Phage Applications and Therapeutics (https://medschool.ucsd.edu/som/medicine/divisions/idgph/research/center-innovative-phage-applications-and-therapeutics/Pages/default.aspx).
It is worth noting also that there is at least a pharmaceutical corporation (https://www.armatapharma.com/) actively developing products in this field. (I disclose that I don't have any connection with such company).
Regards,
Armando

Jump to this post

Armando...many many thanks. Good homework to plow through...which I will do.
Regina

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poodledoc | @poodledoc | Jan 29, 2021

I just had my first appt at Mayo clinic in Jacksonville, FL with Dr Margaret Johnson this week. It went very well, and I was impressed with the entire visit. I questioned her on any new treatments on the horizon. She did not think inhaled Nitric Oxide would be an option but did go on to say Phage therapy was promising, and also mentioned Dipeptidyl Peptidase-4 inhibitors (DPPI) as a new treatment possibility for NTM infections and said there were some Phase 3 clinical studies that showed it to be a good possibility as a treatment. A google search could not find any info on DPPI use for NTM or MAC but did have strong possibilities for corona viruses. Hopefully this new info will become available soon.

REPLY
1 reply
cmi | @cmi | Jan 29, 2021

So happy for you...if they impressed you...that speaks volumes. I will take this with me on my next visit end of February with ID doc...ask him to look i to it also. We will all continue to collaborate 👍🏻
Regina

REPLY
lorifilipek | @lorifilipek | Jan 29, 2021
In reply to @poodledoc "I just had my first appt at Mayo clinic in Jacksonville, FL with Dr Margaret Johnson..." + (show)
@poodledoc

I just had my first appt at Mayo clinic in Jacksonville, FL with Dr Margaret Johnson this week. It went very well, and I was impressed with the entire visit. I questioned her on any new treatments on the horizon. She did not think inhaled Nitric Oxide would be an option but did go on to say Phage therapy was promising, and also mentioned Dipeptidyl Peptidase-4 inhibitors (DPPI) as a new treatment possibility for NTM infections and said there were some Phase 3 clinical studies that showed it to be a good possibility as a treatment. A google search could not find any info on DPPI use for NTM or MAC but did have strong possibilities for corona viruses. Hopefully this new info will become available soon.

Jump to this post

@poodledoc This article might be of interest: "The emerging role of DPP-4 as a therapeutic target in lung disease": https://www.tandfonline.com/doi/full/10.1080/14728222.2020.1721468

REPLY
1 reply
poodledoc | @poodledoc | Jan 29, 2021
In reply to @lorifilipek "@poodledoc This article might be of interest: "The emerging role of DPP-4 as a therapeutic target..." + (show)
@lorifilipek

@poodledoc This article might be of interest: "The emerging role of DPP-4 as a therapeutic target in lung disease": https://www.tandfonline.com/doi/full/10.1080/14728222.2020.1721468

Jump to this post

@lorifilipek Very interesting article. Quite the heavy duty reading! We know that DPP-4 is a bad actor so inhibiting it could certainly be a good thing. I am glad there are some ongoing studies for use against NTM according to Mayo clinic.

REPLY
heathert | @heathert | Jan 31, 2021
In reply to @heathert "Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand..." + (show)
@heathert

Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand does not have Arikayce since the trial and so it is not funded yet, Do you have to pay for it in Aussie. I would have to pay full price.

You only need 1 or even half a strepfen if you need it (husky voice or sore throat) mostly for the first few weeks and occasionally the first few months after the Arikayce nebulising. Also after nebulising rinse and gargle with water, that helps your throat also. I had Arikayce just before bed so I diddnt have to talk until the morning and strain my throat.

Sorry they interact with your other meds, I hope you can get it sorted out.

Any other Questions do not hesitate to ask.

Take care
Heather

Jump to this post

woops I forgot the @ in front of the anniepie. @anniepie on my post above, please see above for the heathert message to you..sorry about the confusion. Heather

REPLY
anniepie | @anniepie | Jan 31, 2021
In reply to @irene5 "@anniepie This is Irene - I do not use Strepfen only because I have been unable..." + (show)
@irene5

@anniepie This is Irene - I do not use Strepfen only because I have been unable to get them. I use Riccola ( singing that now), and they have worked for my throat after Arikayce. Good luck to you.

Jump to this post

Thanks Irene.
Hugs, Annie

REPLY
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