Connect
(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.
@alleycatkate that's a great idea! I nuked water in a big bowl until it was boiling and put a little soap and my nebulizer parts in. Also, started putting the mouthpiece deeper into my mouth when breathing so the saline wouldn't be lost catching on my tongue. I'm finding I have a more productive cough this way.
Margie
Thank you for the reply Heather. How long were you on it? Any side effects?
-
Like -
Helpful -
Hug
1 Reaction@heathert.....How long were you on Arikayce and how long were you on Amikacin before that? Was it hard to get used to all that is involved including cleaning the apparatus daily? I’m starting Arikayce on Monday after initially receiving Amikacin through an IV and then through nebulizing. An instructor is spending two hours on Monday teaching me how to use the new drug. Very interested in hearing what you thought of it, thanks!
@hydrang3a I was on Amakacin liposomal (inhaled) which is the same as Arikayce, for a year., I had no trouble getting used to the whole process, it was a bit time consuming but worth it to me. I never had the IV Amikacin but I have heard that liposomal is alot easier on the body Thats great that you start on Monday, at first you may lose your voice so make sure you have strepfen lozengers, they are anti-inflam/ antibacterial which goes straight to your throat (it was fantastic for my voice) and rinse your mouth out each time you finish Arikayce, Hope it all goes well for you and dont hesitate to ask anything.
Hi @jasmine321 I was on it for a year, great stuff. The only side effects were loss of voice, I used Strepfen lozengers for that.
I also had a glass of water next to me at first as it can make you cough early on.
Hello @heathert my sputum culture is growing MAC again after being free from it for 7 years. I’m having CTscan next week and will see my pulmonologist the following week. He’s thinking of prescribing the 3 antibiotics for 6 months and also put me on the Amikacin liposomal (inhaled). He might also do brochoscopy depending on the results of the CT scan. We haven’t discussed this newly approved medication, he only mentioned it in passing. I’ll have to talk to him more about it because when I read about it, seems like there are some side effects. I am glad you didn’t experienced any serious side effects.
-
Like -
Helpful -
Hug
2 Reactions@jasmine321 ....I am curious what criteria your pulmonologist uses to start treatment for NTM. Because my local ID doctors would have rushed to put me on the triple antibiotic meds with one positive culture, my ID doc at NJH saw no indication for treatment. I asked her what I should say to local docs. She said the gold standard to consider Rx is 2 positive sputum cultures and CT scan showing bronchiectasis. Tdrell44
@jasmine321 those nasty MAC bugs keep coming back, 7 years is great without them growing. I was told that liposomal had way less side effects than IV. It will be interesting to see what your dr says.
-
Like -
Helpful -
Hug
1 Reaction