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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kayekuz@kayekuz | @kaykuz | Sep 5, 2022
In reply to @sueinmn "Hmmm...in your situation, I might campaign for a 6 month trial of 3x/week, unless I had..." + (show)
@sueinmn

Hmmm...in your situation, I might campaign for a 6 month trial of 3x/week, unless I had cavitary MAC (actual open cavities or pockets of infection in the lung - shows on CT.) Also, have they talked about stopping the doxycycline while on the regimen?

My exercise regimen is morning stretching (and sometimes chair yoga), walking 4-5 times a week and playing vigorously with 2 young grandsons or my 2 yo neighbor 2-3 times a week. I also build in 2 "rest days" when all I do is stretch and maybe a short casual walk.

I also "kamikaze" clean my house - pickup, dust, mop, vacuum at full speed, with a goal of getting done in 20-30 minutes. And I maintain a large garden - mostly perennials & shrubs - that keeps me moving about 3-4 hours a week (someone else does the digging & mulching for me now.)
What is the trainer working on with you?

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I sent an email to doctor asking what the plan would be if I have a flareup.
Hope to hear back tomorrow..
And will ask the question about cavitary MAC.
I almost feel I should seek a second opinion from another ID doctor.
I work an hour twice a week with trainer.
20 minute warm up. Then
3 sets of different weight exercises…14 reps. Then another round of two or three sets.
She also uses the big ball and the universal.
You can find the exercises online but I find I’m not that disciplined to do myself so I need to be accountable.
You must have a lot of energy to do what you are doing. That is great!!
Thanks again!!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 5, 2022
In reply to @kaykuz "I sent an email to doctor asking what the plan would be if I have a..." + (show)
@kaykuz

I sent an email to doctor asking what the plan would be if I have a flareup.
Hope to hear back tomorrow..
And will ask the question about cavitary MAC.
I almost feel I should seek a second opinion from another ID doctor.
I work an hour twice a week with trainer.
20 minute warm up. Then
3 sets of different weight exercises…14 reps. Then another round of two or three sets.
She also uses the big ball and the universal.
You can find the exercises online but I find I’m not that disciplined to do myself so I need to be accountable.
You must have a lot of energy to do what you are doing. That is great!!
Thanks again!!

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I laughed when I read, "You must have a lot of energy to do what you are doing. That is great!!" - sometimes I feel like my younger no Bronch/no chronic pain self & I just go, go, oof - stop.
Then I rest - had a busy week, with intentions of resting to day, but got sucked in to more of our "great cleanout." We are committed to clearing the accumulation from our house, which is not so big, but has been going on for 40 years. So far, we have gotten through 2 sheds, the laundry/store room, my sewing room/studio, the guest room and the "cave" under our steps. This weekend & week we plan to finish the family room. That leaves our closet, his workroom/electronics room and a two car garage to be tackled, with a goal of finishing by next July.
Walked 3 miles today & did 21 flights of stairs without leaving the house.A few minutes ago I said to my husband "I'm done - ordering pizza for supper" and I plopped down on the couch. Maybe tomorrow will be my day off?
Do you count major household tasks as part of your daily exercise?
Sue

REPLY
kayekuz@kayekuz | @kaykuz | Sep 6, 2022
In reply to @shirleye2 "The rifampin needs to be on an empty stomach so I finish eating 2 to 3..." + (show)
@shirleye2

The rifampin needs to be on an empty stomach so I finish eating 2 to 3 hours before. My doctor also said not to lie down for 30 mins after taking pills,

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I tried taking Rifampin on empty stomach and it didn't work for me. Of course that was 7 years ago.
I am talking to my pulmonologist tomorrow.
Thanks for all your input.

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 6, 2022
In reply to @extracare808 "I've been on daily Big 3 plus Arikayce for the past month. Prior to that, I..." + (show)
@extracare808

I've been on daily Big 3 plus Arikayce for the past month. Prior to that, I was on 3 x weekly Big 3 for over 9 months without sputum conversion. I take the Big 3 in the evening at least 2 hours after my last meal with one saltine crack and a few sips of water.

I had no side effects on 3 x weekly meds, and haven't experienced any side effects since switching to daily meds.

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This is good to hear..I know we are all different.
I could try two hours after dinner with a snack.
Thanks for your tips.

REPLY
kayekuz@kayekuz | @kaykuz | Sep 6, 2022

Boy, you make me tired just reading your post. You certainly are active.
I am running around a lot because my husband can't drive. That keeps me busy.
No, I don't count household tasks as exercise....If it is something strenuous I will.
I'm having a virtual visit with my pulmonologist tomorrow. Can't wait to see what he has to
say about my MAC. I got a test result today from when I was in hospital and it came back MAC/Intracellulare/ Chimera......Have never seen that on a culture.
I am sure I will be starting the Big 3 tomorrow.
Will be interesting..

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 6, 2022
In reply to @kaykuz "I tried taking Rifampin on empty stomach and it didn't work for me. Of course that..." + (show)
@kaykuz

I tried taking Rifampin on empty stomach and it didn't work for me. Of course that was 7 years ago.
I am talking to my pulmonologist tomorrow.
Thanks for all your input.

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Nope - I couldn't take any of them on an empty stomach - finally switched to all 1 hour before bed with a small snack, slept through the worst of the nausea.
The pulmo nurse said "Do whatever works for you. That's better then quitting because you are so miserable."

REPLY
1 reply
kayekuz@kayekuz | @kaykuz | Sep 6, 2022
In reply to @sueinmn "Nope - I couldn't take any of them on an empty stomach - finally switched to..." + (show)
@sueinmn

Nope - I couldn't take any of them on an empty stomach - finally switched to all 1 hour before bed with a small snack, slept through the worst of the nausea.
The pulmo nurse said "Do whatever works for you. That's better then quitting because you are so miserable."

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What worked for me 7 years ago was taking them right after I ate dinner.
I will see what doctor says tomorrow.
Right now I feel great....I am back to my baseline..
So will see how it goes.

REPLY
cate123456 | @cate123456 | Sep 7, 2022
In reply to @kaykuz "She told me daily because of being on the meds 3 x week and it came..." + (show)
@kaykuz

She told me daily because of being on the meds 3 x week and it came back.
The frustrating part of this is that my pulmonologist kept telling me I didn't have it.
I have had 3 flare ups in a year and one hospitalization.
I haven't started meds yet as I am waiting to hear from doctor as to what the plan is if I have a flare up.
I take Doxycycline and it interacts with Rifampin..
What is your exercise regimen? I have started working with a trainer 2x week and I walk.
Thank you.

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Kaykuz — what type of “flair ups” do you have that put you in the hospital?

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1 reply
kayekuz@kayekuz | @kaykuz | Sep 7, 2022
In reply to @cate123456 "Kaykuz — what type of “flair ups” do you have that put you in the hospital?" + (show)
@cate123456

Kaykuz — what type of “flair ups” do you have that put you in the hospital?

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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

REPLY
1 reply
molnarviolin@gmail.com | @mikemolnar45 | Sep 7, 2022

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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