1. < MAC & Bronchiectasis

Options if MAC goes untreated

Posted by goatlady @goatlady, Feb 22, 2021

MY ID Doctor took me off the "BIG 3" last October because I wasn't able to produce any sputum (never have). Had a CT-Scan done in January showing the MAC is still and Bronchiectasis has gotten worst. My Pulmonary Doctor got in touch with ID Doctor about putting me back on the "Big 3". The ID Doctor won't, she called in a prescription of propranlol. Many years ago another doctor prescribed that for me. I had the worst reaction to that. There is no way I am going to try that drug again. So what happens if I don't treat the MAC?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

mtohealth | @mtohealth | Sep 7 11:12pm

Just curious if anyone who has been using 7% saline have their lips, tongue swell and get thin skin inside their mouth and lips? Not fun!!!

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 8 10:51am
In reply to @mtohealth "Just curious if anyone who has been using 7% saline have their lips, tongue swell and..." + (show)
@mtohealth

Just curious if anyone who has been using 7% saline have their lips, tongue swell and get thin skin inside their mouth and lips? Not fun!!!

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Not something I have experienced, but a number of the other meds like levalbuterol can also cause this. When I am using nebulized meds., or if I get mouth sores from something else, I use a mouthwash for sensitive and sore mouths - which one I buy depends on what the local Walgreens has at the moment.
And sometimes, I lean on old-fashioned Lavoris, which contains cinnamon, anothrer soother.

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laborday24 | @laborday24 | Oct 8 10:25am
In reply to @suzyqueue "Arikayce is what changed the game in my improvement and what has kept me stable. The..." + (show)
@suzyqueue

Arikayce is what changed the game in my improvement and what has kept me stable. The damage the MAC can do is worse than any side effect. The Arikayce takes some getting used to but its very much worth the try and transition.

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Is arykace expensive

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1 reply
suzyqueue | @suzyqueue | Oct 8 10:48am
In reply to @laborday24 "Is arykace expensive" + (show)
@laborday24

Is arykace expensive

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Yes. But there are programs that you my qualify for assistance with cost

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1 reply
laborday24 | @laborday24 | Oct 8 12:31pm
In reply to @suzyqueue "Yes. But there are programs that you my qualify for assistance with cost" + (show)
@suzyqueue

Yes. But there are programs that you my qualify for assistance with cost

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Thank you

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laborday24 | @laborday24 | Oct 9 2:56pm
In reply to @sueinmn "@cwal @pacathy @lilianna @rstel7272 Thank you all for the kind words. This is just prep for..." + (show)
@sueinmn

@cwal @pacathy @lilianna @rstel7272 Thank you all for the kind words. This is just prep for my new Pulmonologist.

I got the portal message last night that we all hate: "Inadequate Sample, testing halted" Grrr...so I'm working today to produce a new and better one.

I have not had a CT or sputum culture since 2021 - no symptoms, only 2 exacerbations, and I produce little sputum, so the old pulmo wouldn't order one. Those showed reduced nodules, no cavities or opacities and minimal (less than 1+) bacteria at 8 weeks.

Rick - this is my first test for this new Pulmonologist - she accepted me into her closed practice when her partner retired a year early. She wants to see "where we are today" and said she orders regular CTs & sputum tests for her patients, frequency determined by her exam and test results.

So, back to the neb & second round of 7% saline today.

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Sue I saw a comment you made I don’t know when. But you said that Mac and Bronchiectasis is something you have to leave with like other diseases. Such a positive attitude and made me feel a little better. I go to njh in November they say they can help but if not I am going to try and have your attitude. Thank you

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 9 4:16pm
In reply to @laborday24 "Sue I saw a comment you made I don’t know when. But you said that Mac..." + (show)
@laborday24

Sue I saw a comment you made I don’t know when. But you said that Mac and Bronchiectasis is something you have to leave with like other diseases. Such a positive attitude and made me feel a little better. I go to njh in November they say they can help but if not I am going to try and have your attitude. Thank you

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Oh yes, NJH can help - help you to live your best life, with or without Bronchiectasis and MAC and with or without antibiotics. They will teach you the best way (for you) to do airway clearance, cover lifestyle issues like exercise, diet and rest, maybe offer tips to help ease anxiety.
Trust me, in early days, I was where you are - I thought I had to change the way I did everything, I would never feel well again, etc. Time, experience, wise doctors and the wonderful members here have taught me to just make it part of life.

And of course, we are always here to encourage you.
Sue

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1 reply
laborday24 | @laborday24 | Oct 9 6:34pm
In reply to @sueinmn "Oh yes, NJH can help - help you to live your best life, with or without..." + (show)
@sueinmn

Oh yes, NJH can help - help you to live your best life, with or without Bronchiectasis and MAC and with or without antibiotics. They will teach you the best way (for you) to do airway clearance, cover lifestyle issues like exercise, diet and rest, maybe offer tips to help ease anxiety.
Trust me, in early days, I was where you are - I thought I had to change the way I did everything, I would never feel well again, etc. Time, experience, wise doctors and the wonderful members here have taught me to just make it part of life.

And of course, we are always here to encourage you.
Sue

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Thank you. I so appreciate your time. Trying to not be anxious but very hard. Not used to having these health issues

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1 reply
laborday24 | @laborday24 | Oct 9 6:38pm

Also. So glad I found this web site. So helpful and informative and reassuring

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 9 6:43pm
In reply to @laborday24 "Thank you. I so appreciate your time. Trying to not be anxious but very hard. Not..." + (show)
@laborday24

Thank you. I so appreciate your time. Trying to not be anxious but very hard. Not used to having these health issues

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I bet if you asked 100 people here if they were anxious, scared, and confused at their diagnosis, at least 95 would say "YES"
We're here to hold your hand, just ask

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