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 | Apr 22, 2021

@tinasims yes I bought a baby bottle sterilizer, it is so fast, its great. Take Care Heather

REPLY
1 reply
kathyhg | @kathyhg | Apr 23, 2021
In reply to @heathert "@tinasims yes I bought a baby bottle sterilizer, it is so fast, its great. Take Care..." + (show)
@heathert

@tinasims yes I bought a baby bottle sterilizer, it is so fast, its great. Take Care Heather

Jump to this post

I bought a baby bottle sterilizer as well. It is so easy to clean/sterilize everything - I still wash/rinse twice a week before sterilizing but otherwise the only thing I do is rinse off the saline before putting pieces into it.
Do you think it is necessary to wash the pieces before putting them?

REPLY
2 replies
heathert | @heathert | Apr 23, 2021
In reply to @kathyhg "I bought a baby bottle sterilizer as well. It is so easy to clean/sterilize everything -..." + (show)
@kathyhg

I bought a baby bottle sterilizer as well. It is so easy to clean/sterilize everything - I still wash/rinse twice a week before sterilizing but otherwise the only thing I do is rinse off the saline before putting pieces into it.
Do you think it is necessary to wash the pieces before putting them?

Jump to this post

@kathyhg I was advised to rinse then soak in boiling water with sunlight detergent, rinse again then sterilize once a day and dry, and on my second nebulize for the day, rinse ,soak with detergent rinse and let dry. so only sterilize once a day and soak and rinse , both times, very time consuming I must say . I have seen other ideas on the net so really do not know which is correct, very tricky. Take care Heather

REPLY
anniepie | @anniepie | Apr 23, 2021
In reply to @heathert "@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the..." + (show)
@heathert

@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the ventolin is working well for you.
I do not boil my aerosol heads, instead I use a sterilizer so they are not too hot and not in the boiling water, I put them onto a paper towel after to dry. It is very difficult to keep them sterile I feel, my dr said if she put a plate down on a table,M AC would be on it in no time. Maby put them in a open snaplock bag to dry, still not fullproof but ok.

Annie I have a question for you, did you get your Arikayce in Australia and was it subsidized by the govt, or did you get it from overseas, I need some as the big 3 is not working and last time when I was on the trial Arikayce worked for me, I did not want to go off it.
Take care Heather

Jump to this post

Thanks Heather @heathert.
No I am part of the USA trial and have to order it from the USA each month. This is the first time for me -- and probably the only time I can get it. For me, this time it is subsidised as part of the trial. But after that it would probably be a huge cost for me to get it.
Arikayce isn't approved in Australia and it looks like it probably won't be approved in Australia in the future. They did an interim study in the USA, and the results showed that longer-term, it had more serious side effects than the existing big 3. So it's not likely to get approval in Australia in the future, And that's also why Arikayce isn't likely to get full approval in the USA either. (It only has "limited population" approval there).
I noticed in the study they only followed up on any relapses for 3 months after all meds were stopped. So it seems to work better for a while, but that may not last for many people. I really wish there were better drugs for us Heather.
Hoping and praying for it.
Annie

REPLY
2 replies
heathert | @heathert | Apr 24, 2021
In reply to @anniepie "Thanks Heather @heathert. No I am part of the USA trial and have to order it..." + (show)
@anniepie

Thanks Heather @heathert.
No I am part of the USA trial and have to order it from the USA each month. This is the first time for me -- and probably the only time I can get it. For me, this time it is subsidised as part of the trial. But after that it would probably be a huge cost for me to get it.
Arikayce isn't approved in Australia and it looks like it probably won't be approved in Australia in the future. They did an interim study in the USA, and the results showed that longer-term, it had more serious side effects than the existing big 3. So it's not likely to get approval in Australia in the future, And that's also why Arikayce isn't likely to get full approval in the USA either. (It only has "limited population" approval there).
I noticed in the study they only followed up on any relapses for 3 months after all meds were stopped. So it seems to work better for a while, but that may not last for many people. I really wish there were better drugs for us Heather.
Hoping and praying for it.
Annie

Jump to this post

Thanks @anniepie , I did not realise that you were in the USA trial, that's great. When the big 3 do not work Arikayce does which is great. Do you remember what the Arikayce long term side effects were, maybe they should follow it up must longer
. I wish we had cures for this.
Take care Heather

REPLY
1 reply
bnthorson | @bnthorson | Apr 24, 2021
In reply to @anniepie "Thanks Heather @heathert. No I am part of the USA trial and have to order it..." + (show)
@anniepie

Thanks Heather @heathert.
No I am part of the USA trial and have to order it from the USA each month. This is the first time for me -- and probably the only time I can get it. For me, this time it is subsidised as part of the trial. But after that it would probably be a huge cost for me to get it.
Arikayce isn't approved in Australia and it looks like it probably won't be approved in Australia in the future. They did an interim study in the USA, and the results showed that longer-term, it had more serious side effects than the existing big 3. So it's not likely to get approval in Australia in the future, And that's also why Arikayce isn't likely to get full approval in the USA either. (It only has "limited population" approval there).
I noticed in the study they only followed up on any relapses for 3 months after all meds were stopped. So it seems to work better for a while, but that may not last for many people. I really wish there were better drugs for us Heather.
Hoping and praying for it.
Annie

Jump to this post

I took amikaycin first, had bad side effects, then tried Arikayce. (The wait on Arikayce was due to financial) after paying 2500$ US, I took 4 doses and my throat started swelling. I was surprised no one followed up, even though I told the distributor, so there is probably no record of my side effects. To make it worse , I have 24 unused doses of a very expensive medication. I would love to give it away, if someone lives close enough we could drive, so far no luck.
Meanwhile I am now on the 3+Clofazimine. Side effects are very manageable.

REPLY
1 reply
vfparker | @vfparker | Apr 24, 2021
In reply to @kathyhg "I bought a baby bottle sterilizer as well. It is so easy to clean/sterilize everything -..." + (show)
@kathyhg

I bought a baby bottle sterilizer as well. It is so easy to clean/sterilize everything - I still wash/rinse twice a week before sterilizing but otherwise the only thing I do is rinse off the saline before putting pieces into it.
Do you think it is necessary to wash the pieces before putting them?

Jump to this post

Great idea

REPLY
spencersok | @spencersok | Apr 24, 2021
In reply to @tinaesims "I had not thought of a sterilizer. Do you use just a baby bottle sterilizer?" + (show)
@tinaesims

I had not thought of a sterilizer. Do you use just a baby bottle sterilizer?

Jump to this post

My wife's doctor just prescribed a nebulizer and the vest for my wife. I am wondering what has been the experience of anyone in the group...Did it help you with your cough?

REPLY
1 reply
spencersok | @spencersok | Apr 24, 2021

My wife's doctor just prescribed a nebulizer and the vest for my wife. I am wondering what has been the experience of anyone in the group…Did it help you with your cough?

REPLY
2 replies
heathert | @heathert | Apr 24, 2021
In reply to @bnthorson "I took amikaycin first, had bad side effects, then tried Arikayce. (The wait on Arikayce was..." + (show)
@bnthorson

I took amikaycin first, had bad side effects, then tried Arikayce. (The wait on Arikayce was due to financial) after paying 2500$ US, I took 4 doses and my throat started swelling. I was surprised no one followed up, even though I told the distributor, so there is probably no record of my side effects. To make it worse , I have 24 unused doses of a very expensive medication. I would love to give it away, if someone lives close enough we could drive, so far no luck.
Meanwhile I am now on the 3+Clofazimine. Side effects are very manageable.

Jump to this post

@bnthorson, I am in New Zealand unfortunatly. Good to know the clofazimine is going well. Take care

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