1. < MAC & Bronchiectasis

Has anyone taken the Big 3 Daily?

Posted by kayekuz@kayekuz @kaykuz, Sep 4, 2022

I have had bronchiectasis for 7 years....Also diagnosed with Mac then too...Pulmonary Doctor put me on the Big 3 right away......Took 3 times a week for a year...Supposedly cured....Fortunately no side effects..
Now it is back.. My pulmonologist has told me I didn't
have it for the last year. Have had many cultures. One did show MAC in July. I was hospitalized for the first time end of July. Had to follow up with ID doctor. She told me I have had it since last Sept.
She said I needed to take the meds daily. So just wondered if anyone has...Most I know take 3 x week.
If anyone has taken daily did you have many side effects? I know we are all different. I am just so reluctant..
I do airway clearance twice a day using albuterol and sodium chloride 7% and also the smart vest.
So I would appreciate any input.

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cate123456 | @cate123456 | Sep 8, 2022
In reply to @kaykuz "I started out with what I thought was a summer cold and sore throat....Next day lots..." + (show)
@kaykuz

I started out with what I thought was a summer cold and sore throat....Next day lots of fatigue. Also coughed up blood early morning. Later that evening coughing incessantly and shortness of breath really bad along with dark mucus.
Went to ER and they admitted me for 3 days.
First time ever being in hospital....Last two years I have averaged 3-4 exacerbations a year...same symptoms...but didn't have the shortness of breath.
So could have had MAC then

Jump to this post

Yikes— scary.
I asked because years ago before they knew I had MAC but the hospital did know I had bronchiectasis, I’d cough up a lot of blood along with big clots and the ER docs would always just send me home saying it was probably just my sinuses. Grrrr….. thankfully finally got in a great pulmonologist.

I hope the daily regimen works for you!

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 8, 2022
In reply to @mikemolnar45 "I take the big three daily usually on an empty stomach with no repercussions. Is the..." + (show)
@mikemolnar45

I take the big three daily usually on an empty stomach with no repercussions.

Is the exhaustion due to MAI or the meds?

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I would say MAI. I’m never fatigued until an exacerbation.
Boy, you are so lucky.
How long have you been taking them???

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 8, 2022
In reply to @cate123456 "Yikes— scary. I asked because years ago before they knew I had MAC but the hospital..." + (show)
@cate123456

Yikes— scary.
I asked because years ago before they knew I had MAC but the hospital did know I had bronchiectasis, I’d cough up a lot of blood along with big clots and the ER docs would always just send me home saying it was probably just my sinuses. Grrrr….. thankfully finally got in a great pulmonologist.

I hope the daily regimen works for you!

Jump to this post

How long did it take before you got your MAI diagnosis?
Yes…a good pulmonologist is important.
Did you see an ID doctor?

REPLY
2 replies
molnarviolin@gmail.com | @mikemolnar45 | Sep 8, 2022
In reply to @kaykuz "I would say MAI. I’m never fatigued until an exacerbation. Boy, you are so lucky. How..." + (show)
@kaykuz

I would say MAI. I’m never fatigued until an exacerbation.
Boy, you are so lucky.
How long have you been taking them???

Jump to this post

I’m on the big 3 since January 2022. My later start CAT scan shows it fading. I breath better too.

REPLY
1 reply
molnarviolin@gmail.com | @mikemolnar45 | Sep 8, 2022
In reply to @kaykuz "How long did it take before you got your MAI diagnosis? Yes…a good pulmonologist is important...." + (show)
@kaykuz

How long did it take before you got your MAI diagnosis?
Yes…a good pulmonologist is important.
Did you see an ID doctor?

Jump to this post

All my diseases were discovered accidentally. An x-ray picked up lung cancer. The pulmonologist noticed the feathery features and diagnosed it as MAI which a sputum sample verified. This was in Nov. 2021. I started antibiotics after surgery on 28 Dec. No ID dr.

REPLY
cate123456 | @cate123456 | Sep 8, 2022
In reply to @kaykuz "How long did it take before you got your MAI diagnosis? Yes…a good pulmonologist is important...." + (show)
@kaykuz

How long did it take before you got your MAI diagnosis?
Yes…a good pulmonologist is important.
Did you see an ID doctor?

Jump to this post

When was I diagnosed?
The ER docs kept telling me the bleeding episodes were my sinuses even though they knew I had bronchiactasis
( diagnose 18 years ago) so went to ENT doc, and HE KNEW bleeding was my lungs, so got me in with top pulmonologist.
From there CT scan and bronchoscopy was done showing MAC and a coinfection of Staph Aureus which is what caused the continuing bleeding and clots, but I’d apparently had the MAC for years with no symptoms.

And yes, I also have an I.D. Doctor who specializes in NTM diseases.

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 8, 2022
In reply to @cate123456 "When was I diagnosed? The ER docs kept telling me the bleeding episodes were my sinuses..." + (show)
@cate123456

When was I diagnosed?
The ER docs kept telling me the bleeding episodes were my sinuses even though they knew I had bronchiactasis
( diagnose 18 years ago) so went to ENT doc, and HE KNEW bleeding was my lungs, so got me in with top pulmonologist.
From there CT scan and bronchoscopy was done showing MAC and a coinfection of Staph Aureus which is what caused the continuing bleeding and clots, but I’d apparently had the MAC for years with no symptoms.

And yes, I also have an I.D. Doctor who specializes in NTM diseases.

Jump to this post

I really think I have had bronchiectasis and Mac for years.....even before 2015.
Have a history of pneumonia. Now I believe it was both with the symptoms I had.
I never have any symptoms until a flareup/ exacerbation.
Where do you live?
I am doctoring at Cleveland Clinic. But do believe I should go to NJH.

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 8, 2022
In reply to @mikemolnar45 "I’m on the big 3 since January 2022. My later start CAT scan shows it fading...." + (show)
@mikemolnar45

I’m on the big 3 since January 2022. My later start CAT scan shows it fading. I breath better too.

Jump to this post

It sounds as though you had a very good pulmonary doctor.
I hope I am as lucky as you are with the meds.
I will be starting them tomorrow.

REPLY
1 reply
molnarviolin@gmail.com | @mikemolnar45 | Sep 9, 2022
In reply to @kaykuz "It sounds as though you had a very good pulmonary doctor. I hope I am as..." + (show)
@kaykuz

It sounds as though you had a very good pulmonary doctor.
I hope I am as lucky as you are with the meds.
I will be starting them tomorrow.

Jump to this post

I had no issue with the meds. One physician said to eat some crackers with it if I was having a stomach ache. I think a piece of toast could help too. I drink lots of fluids which helps. Coffee or iced tea.

REPLY
molnarviolin@gmail.com | @mikemolnar45 | Sep 9, 2022
In reply to @kaykuz "I really think I have had bronchiectasis and Mac for years.....even before 2015. Have a history..." + (show)
@kaykuz

I really think I have had bronchiectasis and Mac for years.....even before 2015.
Have a history of pneumonia. Now I believe it was both with the symptoms I had.
I never have any symptoms until a flareup/ exacerbation.
Where do you live?
I am doctoring at Cleveland Clinic. But do believe I should go to NJH.

Jump to this post

I live is Warren NJ near the north center of NJ. Lots of great physicians.

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