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Penn Medicine/Rifampin
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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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.
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1 ReactionHi 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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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