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

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

@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.

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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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@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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@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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Hi ! I’ve had Bronchiectasis for at least 10 years and Mac for 6. During this time I’ve educated myself about my disease (thanks to all in this chat room!) and became increasingly diligent about AC, sterilization of equipment, and avoidance of environmental mac; I think this kept me stable all these years. After my last CT about 2 months ago, my docs finally decided it was time to start the big 3-disappointed but could not talk them out of it this time. I’ve tried several medication schedules. It was difficult to assess in the beginning because I also had the flu. The best schedule I have found so far for minimizing GI upset is to take the azithromycin and ethambutal in morning with breakfast and take rifampin about hour before dinner. Hope this helps!
K

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@kagilb

Hi ! I’ve had Bronchiectasis for at least 10 years and Mac for 6. During this time I’ve educated myself about my disease (thanks to all in this chat room!) and became increasingly diligent about AC, sterilization of equipment, and avoidance of environmental mac; I think this kept me stable all these years. After my last CT about 2 months ago, my docs finally decided it was time to start the big 3-disappointed but could not talk them out of it this time. I’ve tried several medication schedules. It was difficult to assess in the beginning because I also had the flu. The best schedule I have found so far for minimizing GI upset is to take the azithromycin and ethambutal in morning with breakfast and take rifampin about hour before dinner. Hope this helps!
K

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I see a pulmonologist at Jeff in Philly. I too have bronchitis and Mac. I took AZ and ethambutol for a year ending three years ago. While I have had a recent flare up of pseudomonas, Mac is not showing up in my cultures. Jeff is affiliated with Jewish Health. It seems they are leaning towards not including Rifampin in the treatment of Mac. For many it is the one that is most difficult to handle.

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@segriffith

I see a pulmonologist at Jeff in Philly. I too have bronchitis and Mac. I took AZ and ethambutol for a year ending three years ago. While I have had a recent flare up of pseudomonas, Mac is not showing up in my cultures. Jeff is affiliated with Jewish Health. It seems they are leaning towards not including Rifampin in the treatment of Mac. For many it is the one that is most difficult to handle.

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My long time pulmonary doc works at Jefferson center city Philly. They recently established a bronchiectasis clinic there, and it was on my visit to the clinic several months ago that the antibiotics for Mac were started, including rifampin. It would be welcome if the regimen could be trimmed down a bit!

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@kagilb

My long time pulmonary doc works at Jefferson center city Philly. They recently established a bronchiectasis clinic there, and it was on my visit to the clinic several months ago that the antibiotics for Mac were started, including rifampin. It would be welcome if the regimen could be trimmed down a bit!

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So interesting. I am going to ask about this during my next visit at the end of the month.

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@kagilb

Hi ! I’ve had Bronchiectasis for at least 10 years and Mac for 6. During this time I’ve educated myself about my disease (thanks to all in this chat room!) and became increasingly diligent about AC, sterilization of equipment, and avoidance of environmental mac; I think this kept me stable all these years. After my last CT about 2 months ago, my docs finally decided it was time to start the big 3-disappointed but could not talk them out of it this time. I’ve tried several medication schedules. It was difficult to assess in the beginning because I also had the flu. The best schedule I have found so far for minimizing GI upset is to take the azithromycin and ethambutal in morning with breakfast and take rifampin about hour before dinner. Hope this helps!
K

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What do you mean by "diligent about AC"
Thank you
Ann P

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@segriffith

So interesting. I am going to ask about this during my next visit at the end of the month.

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Jeff actually calls the clinic the "NTM" clinic, so I assume they focus on those patients.

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@amap2025

What do you mean by "diligent about AC"
Thank you
Ann P

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Hi Ann - I try to do the best I can with airway clearance as most of us do. Twice a day neb 7% saline, I use a Smart Vest 2x/d, good coughing technique, Aerobika. I try with the postural drainage but could do better! I don't take the vest with me when I fly, it's just too much.
K

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K,
Thank you for your quick response. I am feeling silly after your answer. I have BE with MAC. Just getting started in all this education and self care.
So grateful for all the wonderful people who are willing to take time to help each other.
Take care
Ann

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