1. < MAC & Bronchiectasis
Profile picture for Katherine, Alumni Mentor

(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.

Profile picture for sandykayhud
sandykayhud | @sandykayhud | Jun 28, 2019
In reply to @heathert "@sandykayhud I was on Arkarice for a year and it was fantastic, only side effect was..." + (show)
Profile picture for heathert @heathert

@sandykayhud I was on Arkarice for a year and it was fantastic, only side effect was loss of voice and bit of a sore throat in the beginning and I would inhale just b4 bed, rince my mouth after inhaling and suck on sudafed which all helped alot. To me Arkarice was great , the big 3 diddnt get rid of my MAC but Arkirice gave me negitive sputums. All the best. Heather

Jump to this post

Thanks for your response. Was your loss of voice for a prolonged period of time? I am already having lots of voice problems due to damage to my esophagus from radiation treatments. I have had speech therapy and my voice still comes and goes. So you can see why I am hesitant about the side effect of the Arkarice. Are you still negative for the MAC? Thanks for the help....Sandy

REPLY
1 reply
Profile picture for heathert
heathert | @heathert | Jun 28, 2019

Hi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days so took a break) then started getting better, it was always there a bit but not a problem most the time. Take care

REPLY
1 reply
Profile picture for anniepie
anniepie | @anniepie | Jun 29, 2019
In reply to @heathert "Hi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days..." + (show)
Profile picture for heathert @heathert

Hi @sandykayhud The voice problem was bad for a week(I had no voice for 3 days so took a break) then started getting better, it was always there a bit but not a problem most the time. Take care

Jump to this post

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

REPLY
3 replies
Profile picture for heathert
heathert | @heathert | Jun 29, 2019

Thanks for that info @anniepie, love knowing that people are working on a cure for us. Lets hope SPR720 is successful in becoming a medication approved.

REPLY
Profile picture for pfists
pfists | @pfists | Jun 29, 2019
In reply to @anniepie "Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot..." + (show)
Profile picture for anniepie @anniepie

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

Jump to this post

@anniepie
This SPR720 is something to keep our eye out for.
It is a drug that you would take in combo with others right? I will look for more articles on it.
Thanks!
Shari

REPLY
1 reply
Profile picture for tdrell
tdrell | @tdrell | Jun 29, 2019
In reply to @pfists "@anniepie This SPR720 is something to keep our eye out for. It is a drug that..." + (show)
Profile picture for pfists @pfists

@anniepie
This SPR720 is something to keep our eye out for.
It is a drug that you would take in combo with others right? I will look for more articles on it.
Thanks!
Shari

Jump to this post

@pfists ….I think it is awesome that there is something like SPR720 on horizon....but believe from comments in link that Europe will get to try first....so those folks out of USA will have to keep us posted...tdrell

REPLY
Profile picture for Brenda R.
Brenda R. | @brigby | Jun 30, 2019
In reply to @anniepie "Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot..." + (show)
Profile picture for anniepie @anniepie

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

Jump to this post

@anniepie Thank you!

REPLY
Profile picture for jasmine321
jasmine321 | @jasmine321 | Jun 30, 2019
In reply to @sandykayhud "Thanks for your response. Was your loss of voice for a prolonged period of time? I..." + (show)
Profile picture for sandykayhud @sandykayhud

Thanks for your response. Was your loss of voice for a prolonged period of time? I am already having lots of voice problems due to damage to my esophagus from radiation treatments. I have had speech therapy and my voice still comes and goes. So you can see why I am hesitant about the side effect of the Arkarice. Are you still negative for the MAC? Thanks for the help....Sandy

Jump to this post

@sandykayhud I started Arikayce in April. After the first week I started having hoarseness. After my second week, I had a follow up appointment with my pulmonologist and he told me to stop it for a week due to severe hoarseness. My voice got better and I resumed the treatment. I had to do the albuterol inhalation before the Arikayce, gargle with warm water after each treatment and I also drank warm water after. A week after I resumed the treatment, I started having hoarseness again. I had an appointment with the ID doctor last Wednesday and he stopped the Arikayce. He replaced it with another oral antibiotics called Linezolid 600 mg once a day. So I’m now taking the big 3 plus the Linezolid. He ordered CT scan in 3 months. I will take this Linezolid for 6 months and if the MAC doesn’t get better, he may replace it with this “stronger” medication but he will get the approval from the CDC. He said it’s very hard to get this medication, they have to submit a lot of paperwork. I don’t remember the name of the medication. I will see the pulmonologist this July, he may know what medicine the ID doctor is referring to.

REPLY
2 replies
Profile picture for sandykayhud
sandykayhud | @sandykayhud | Jun 30, 2019

Thanks for the info. I am hesitant about taking the Arikayce because I am already battling voice problems as a result of radiation damage to my esophagus.
Let me know the name of the other med if you find out. The big 3 for 2 years did get rid of the MAC for a period of time but has returned. Your info has helped me alot...thanks and God bless you in your treatments.

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