(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Sorry -- computer glitches. Hi Jennifer @jr2366. I haven't started the Aricayce yet -- it might take a month or longer to get it from the USA (I am in Australia). Heather (@heathert) is the 'expert' on Aricayce right now, so I'd ask her about it.
I think when I do start Aricacyce, then I will be on 4 drugs altogether -- the 'big 3' plus Aricayce.
Don't worry too much about the big 3. Each drug has its side effects and many people only get some of the minor issues.. It really seems to be about how long you have to take the meds. For some people it needs to be 3 years or longer. Taking anything for that long might give some people a few more problems.
If you have mycobacterium Avium maybe you will need to be on the drugs for a shorter time.
Like I think Irene said, I'm surprised your pulmonologist has put you on only 1 drug. Possibly there is more risk of developing drug resistance that way. That's why they usually put us on 3 drugs at the same time -- partly it is to slow down the development of drug resistance to the macrolide (Azithromycin or Clarithromycin).
Good luck Jennifer

@anniepie I had no idea that the susceptibility test was not great, surely they could do some longer term biofilm testing on Intracellulare. I was on the big 3 for 3 years, 3x weekly and 2 years daily (the last year with Arakrice) before it finally stopped doing damage in my lungs. It can be long haul. Take care Heather

How do I find that thread?
Thanks,
Ellen

Hi @anniepie, my Dr says that Arikayce is good to clear mac up for a while but like the other meds it often returns, unfortunatly. Yes I am on the big 3 daily, but apart from the QT interval its going well, I will keep an eye on my ECG like you. I hope your pills are not causing trouble. We are not far from each other,what part of Aussie are you in, hope aussie covid is improvng. We are in this together, which helps alot. Take care Heather

Me too Heather -- I wish that also.

Most drugs fighting all kinds of bacteria are petri-dish-tested using mainly the planktonic ('free- floating') stage of bacteria, not really testing much sessile bacteria living inside biofilms. The drug companies do that to show their drugs work. (They would need drug doses far far higher to fight through biofilm to get to the bacteria, and nobody can survive that).

Some NTM drugs do manage to get into the outer layers of the biofilm though -- just not into the inner bacteria in biofilm. (Azithromycin is one that can do this a bit -- at least for a while). So it's no wonder the drugs can take such a long time trying to kill this bug.

Unfortunately our lungs a rather delicate things -- we can't treat them like "old leather bags" as many people do when we're young! While our stomachs can handle vinegar and things like that, our lungs cannot. (Neat vinegar kills mycobacteria, folks!). But even inhaling vinegar gas into our lungs can cause severe damage to our lungs, unfortunately. The lungs are a difficult place to treat bugs.
And it's very difficult to find things that break up biofilms in the lungs that are also safe to use in the lungs.

Some people, with cystc fibrosis for example, have tried nebulising drops of essential oits that are meant to be antimicrobial and fight biofilm. But then they can develop severe hypersensitivity reactions to them in their lungs, and can't use them again. Some other people have started using sound vibrations on their chests (some sound vibrations are used to help prevent biofilms from developing on surgical equipment). But it's difficult and I wish there was much, much more research on mycobacteria treatments and biocides for biofilms that are safe to use in the lungs. We all do.

Poodledoc I have yet to be confirmed with MAC or anything else besides Asthma but my symptoms point to it , fingers crossed it’s not 🙂 but I have been on here for a short time and have learned so much. I agree about the antibiotics after reading everything , do I take it for years if the end result is a guessing game .... thoughts everyone ?

Rvan, there are many friends within this forum that have clinical knowledge, personal experience, and amazing minds. I too am a newbie, an apprentice here; I too was diagnosed back with late onset “adult Asthma” ( I am sure a created label) in 2018 although never found in my family tree nor with the typical characteristics. I was diagnosed with MAC after the Bronchoscopy Oct 3, 2020 when AFB lit up immediately. My very cherished Pulmonary Dr (who assured me has much experience treating MAC) calmly and lovingly explained that “presently the course of treatment” is mapped by the patients condition, symptoms, overall health with any and all comorbidity. Even “weight” was a factor...low BMI means more chance of progression. So the facts cards were lay down on my mental table, deck stacked, and the decision was mine. I could “draw” and “stay in the game”....start a treatment that has NO guarantee...but is the course offered (the game), or fold (as many do and have...which my doctor loudly pointed out to me...BUT...there is always a but) and do nothing right now. As you can see, I am a real card player...Canasta as a child Bridge as a mature Woman...so...I checked my hand and reviewed the table...here now comes the BUT...
“What is my life...the minutes and hours of participating on this planet...with the persons I love and care about...with what I can accomplish, offer, and leave behind...worth to me? Or “NEED to be for me”? My personal answer...and everyone on this forum will have there very own version of this answer....BUT my answer is I must have the quality of time existing...that allows me to have that time to love and be present. So, rvan, the BUT for each of us will be different...you will need to ask yourself “what are YOU willing to do about your situation?”
The doctors will offer the best they have today...these lovely friends of the forum can share their thoughts...but only you can determine the best treatment for you. Mine was a very quick decision; the drugs are an arduous path to long chemical therapy, with no guarantee...my pains, weight, fatigue, lack of air, all are unacceptable conditions for me to exist in companionship with my world, so I chose the drug therapy and am grateful that I could make the choice. I am on my second month of the cocktail of 3, have my energy back, can breathe, pain diminished, my family and friends quit whispering about me behind my back (pure love and fear), cannot produce any sputum (a variant of MAC/Lady Windermere Syndrome) so must hold my hand close to my heart and draw and discard each and every day. I draw...on my gratitude...and I discard my fear.

I wish you the best of luck and wisdom in making your decision.
Be well,
Regina

Rvan, there are many friends within this forum that have clinical knowledge, personal experience, and amazing minds. I too am a newbie, an apprentice here; I too was diagnosed back with late onset “adult Asthma” ( I am sure a created label) in 2018 although never found in my family tree nor with the typical characteristics. I was diagnosed with MAC after the Bronchoscopy Oct 3, 2020 when AFB lit up immediately. My very cherished Pulmonary Dr (who assured me has much experience treating MAC) calmly and lovingly explained that “presently the course of treatment” is mapped by the patients condition, symptoms, overall health with any and all comorbidity. Even “weight” was a factor...low BMI means more chance of progression. So the facts cards were lay down on my mental table, deck stacked, and the decision was mine. I could “draw” and “stay in the game”....start a treatment that has NO guarantee...but is the course offered (the game), or fold (as many do and have...which my doctor loudly pointed out to me...BUT...there is always a but) and do nothing right now. As you can see, I am a real card player...Canasta as a child Bridge as a mature Woman...so...I checked my hand and reviewed the table...here now comes the BUT...
“What is my life...the minutes and hours of participating on this planet...with the persons I love and care about...with what I can accomplish, offer, and leave behind...worth to me? Or “NEED to be for me”? My personal answer...and everyone on this forum will have there very own version of this answer....BUT my answer is I must have the quality of time existing...that allows me to have that time to love and be present. So, rvan, the BUT for each of us will be different...you will need to ask yourself “what are YOU willing to do about your situation?”
The doctors will offer the best they have today...these lovely friends of the forum can share their thoughts...but only you can determine the best treatment for you. Mine was a very quick decision; the drugs are an arduous path to long chemical therapy, with no guarantee...my pains, weight, fatigue, lack of air, all are unacceptable conditions for me to exist in companionship with my world, so I chose the drug therapy and am grateful that I could make the choice. I am on my second month of the cocktail of 3, have my energy back, can breathe, pain diminished, my family and friends quit whispering about me behind my back (pure love and fear), cannot produce any sputum (a variant of MAC/Lady Windermere Syndrome) so must hold my hand close to my heart and draw and discard each and every day. I draw...on my gratitude...and I discard my fear.

I wish you the best of luck and wisdom in making your decision.
Be well,
Regina