1. < MAC & Bronchiectasis

Penn Medicine/Rifampin

Posted by njlynn @njlynn, May 5 3:23pm

Hello, I am new to this platform while I've had bronchiectasis for 7 years, I only recently tested positive for MAC . It was a bombshell for me; I suppose since I'd gone 7 years without testing positive for it, I had put in out of my mind.
I've been going to Dr. Michael Rey at Penn Medicine Harron Lung Center for treatment since 2022 and just wondered if there are other people getting treated at Penn on this Forum.
I recently started the Big 3 antibiotic regime- about to add rifampin this week -- but saw an interesting post on this site casting doubt on rifampin's efficacy. So I am curious whether most other people taking antibiotics for MAC are skipping it or taking it?
NJLynn

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mlit | @mlit | 16 hours ago
In reply to @sheila7a "How do you take them? All together, morning noon or night? Do you stagger them? My..." + (show)
@sheila7a

How do you take them?
All together, morning noon or night?
Do you stagger them?
My problem is when to take because I'm always out or with grandchildren. Meals are never scheduled.
I remember a member saying took all together before bed.
That's a lot of pills!

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Hello,
I take all 3 : Azithromycin @ 8:45 pm/ Ethambutol @9:15/ Rifampin at 10 pm. No side effects thus far.
I started Azithro early March, then added the others with a week in between each. Dr suggested spreading them out, helps to know which one might cause side effects.
Hoping you do well, Sheila.

REPLY
cd33 | @cd33 | 15 hours ago
In reply to @sheila7a "I remember a post on here about someone taking all their pills at night after dinner..." + (show)
@sheila7a

I remember a post on here about someone taking all their pills at night after dinner and before bed.
She said helps her avoid the nausea.
I'm starting tomorrow.
When I saw the ID doctor he went through all the side effects and ended with I might pass out.
Now if he would've started with that the appointment would have been over.
I just went blank I remember saying I live alone and drive by myself.
I keep thinking about(crying right now)passing out while driving and hurting an innocent person.
The fact of passing out at home at least it's just me.
I think it's the Azithromycin.
He sent me for ECG and said everything looked good.
Long story short I'm going to take at night after dinner and before bed. Does anyone do this?
Swallow six pills at night.
Sorry for no commas etc.
Using right hand because hurt left one.

Jump to this post

Hi there don’t stress!
I started the big 3 4 months ago. I took them all in the morning. They started me on Azithromycin rifampicin and ethambutol but only 4 x ethambutol and 1 Azithromycin for first week then introduced rifampicin next week. I haven’t heard of and have not been told of a side effect of passing out. You had the ecg which was fine I’m pretty sure if you felt anything different with your heart you wouldn’t be driving anyway you would be reporting this to a doctor. I had to come off the ethambutol because of side effects tingling and burning in feet peripheral neuropathy. So am on Clofazimine. Taking these drugs is scary but there a lots of people who have no effects and breeze through. Keep an open mind, you could cope well. Some take their doses at night and seem to cope better some take 2 in the am and then the other at night. I take mine early morning Az and rifampicin together on empty stomach with a full glass of water and then clofazimine 1.5 hours later with food or milk. I do get an upset stomach for most of the morning but by afternoon is much better. Be strong, you can do this, you got this!

REPLY
1 reply
sheila7a | @sheila7a | 13 hours ago
In reply to @cd33 "Hi there don’t stress! I started the big 3 4 months ago. I took them all..." + (show)
@cd33

Hi there don’t stress!
I started the big 3 4 months ago. I took them all in the morning. They started me on Azithromycin rifampicin and ethambutol but only 4 x ethambutol and 1 Azithromycin for first week then introduced rifampicin next week. I haven’t heard of and have not been told of a side effect of passing out. You had the ecg which was fine I’m pretty sure if you felt anything different with your heart you wouldn’t be driving anyway you would be reporting this to a doctor. I had to come off the ethambutol because of side effects tingling and burning in feet peripheral neuropathy. So am on Clofazimine. Taking these drugs is scary but there a lots of people who have no effects and breeze through. Keep an open mind, you could cope well. Some take their doses at night and seem to cope better some take 2 in the am and then the other at night. I take mine early morning Az and rifampicin together on empty stomach with a full glass of water and then clofazimine 1.5 hours later with food or milk. I do get an upset stomach for most of the morning but by afternoon is much better. Be strong, you can do this, you got this!

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👍

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