Has anyone taken the Big 3 Daily?

Posted by kayekuz@kayekuz @kaykuz, Sep 4 9:10pm

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.

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

I do daily along with Arikayce since Match. I have had 3 neg cultures since starting. I take all meds before bed and that seems to be working. A little rough the first month. I do eat to keep my weight up. I have bronchiectasis, MAC with cavitation.
Rifampin 600 mg
Azithromycin 500 mg
Ethambutol 900 mg

I also neb albuterol, 3% saline , use a vest 2x daily. I use an Anoro inhaler once a day.

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I have been on daily Azithro, Ethambutol, rifampin, for 2.5 years. Had my first neg in June but still on meds until next Feb. if all stays negative. I stopped nebs last November because of a cavity that developed in upper right lobe. I started using dry salt inhaler by Nevlers and areobika and the cavity collapsed and stayed away since I did that. I also raised the head of my bed 4" on my docs advice. My tinnitus is out of control so could be from the azithro. Waiting to talk to doc. This has been my second go around and it has been a big struggle not to lose hope.

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@kaykuz Did the ID doc tell you why the recommendation is for daily? Usually I believe that is reserved for cavitary MAC, aggressive strains, or MAC that doesn't respond to 3X weekly treatment.

In 2019, when I was switched from 3 x weekly to daily, it was because my lung nodules were still getting larger, they were afraid it was going to become cavitary, and I had been on the lower dose for over a year without results. Within 6 months, the nodules shrunk, even though my cultures were still positive, but I was having extreme difficulty with nausea, fatigue & weight loss. At that point we stopped the antibiotics, but continued airway clearance with 7% saline. My lung CT's have remained stable (due for another in October to confirm.)
Sue

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@shirleye2

I do daily along with Arikayce since Match. I have had 3 neg cultures since starting. I take all meds before bed and that seems to be working. A little rough the first month. I do eat to keep my weight up. I have bronchiectasis, MAC with cavitation.
Rifampin 600 mg
Azithromycin 500 mg
Ethambutol 900 mg

I also neb albuterol, 3% saline , use a vest 2x daily. I use an Anoro inhaler once a day.

Jump to this post

Do you eat something before taking your meds?
I plan to take after dinner….I tried taking in morning last time and it didn't work.
I will be on 1000mg of Ethambutol, 250 Aritho, and 600 rifampin. The 1000mg scares me…But going to try.
Do you think the vest works for you? I have used it for a year and I feel that nebulizing with 7% chloride and albuterol works better for me.
Thank you.

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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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@sueinmn

@kaykuz Did the ID doc tell you why the recommendation is for daily? Usually I believe that is reserved for cavitary MAC, aggressive strains, or MAC that doesn't respond to 3X weekly treatment.

In 2019, when I was switched from 3 x weekly to daily, it was because my lung nodules were still getting larger, they were afraid it was going to become cavitary, and I had been on the lower dose for over a year without results. Within 6 months, the nodules shrunk, even though my cultures were still positive, but I was having extreme difficulty with nausea, fatigue & weight loss. At that point we stopped the antibiotics, but continued airway clearance with 7% saline. My lung CT's have remained stable (due for another in October to confirm.)
Sue

Jump to this post

Sue…I replied to your post under shirleye2. I didn't notice I did that..

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@kaykuz

Do you eat something before taking your meds?
I plan to take after dinner….I tried taking in morning last time and it didn't work.
I will be on 1000mg of Ethambutol, 250 Aritho, and 600 rifampin. The 1000mg scares me…But going to try.
Do you think the vest works for you? I have used it for a year and I feel that nebulizing with 7% chloride and albuterol works better for me.
Thank you.

Jump to this post

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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@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.

Jump to this post

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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@bluesplashgirl

I have been on daily Azithro, Ethambutol, rifampin, for 2.5 years. Had my first neg in June but still on meds until next Feb. if all stays negative. I stopped nebs last November because of a cavity that developed in upper right lobe. I started using dry salt inhaler by Nevlers and areobika and the cavity collapsed and stayed away since I did that. I also raised the head of my bed 4" on my docs advice. My tinnitus is out of control so could be from the azithro. Waiting to talk to doc. This has been my second go around and it has been a big struggle not to lose hope.

Jump to this post

Wow! 2 1/2 years. That is a long time and not many side effects it appears except for your tinnitus.
I sleep elevated on a wedge upon the recommendation of my pulmonary doctor in FL. . He suggested the Sleep Number bed but haven't bought one yet.
Sure hope all turns out well in Feb for you

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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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@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?

Jump to this post

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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@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!!

Jump to this post

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

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