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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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Great question, Lynn. I checked and Dr Rey (mentioned in other thread) is listed in bronch clinic. Are you seeing one of ID docs there, too?
If you pm me, we can set up a time.
I am starting antibiotics for MAC.
Azithromycin 500mg
Ethambutol 1200 mg(3tablets)
Rifampin 600(2 capsules)
I'm very nervous about this.
Does anyone else have to swallow 6 pills?
I thought it would only be 3.
Can I take at one time with minimal sips of water?
The 2200 mg seems so high yet doctor said based on my weight.
The reason they want me to start is because of weight loss and fatigue.
Sorry. I meant 1200 of Ethambutol.
I just tested positive so I can’t answer your question but it’s a good one and when you get an answer, please update me. I’m nervous. I start in June. Nothing sounds good about the treatment.
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3 ReactionsTry to space out taking the antibiotics. Ask to start them one at a time so you can pin point any side effects. Take probiotics and ask for Ondansetron to avoid feeling sick etc. Some people cope very well. Weight loss is the hard bit as your appetite might be affected. Good luck - ask lots of questions.
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1 ReactionRose, totally feel you! I'm nervous about the antibiotics too, but many people do well on them so there is reason for optimism.
I’m glad to hear this because I hear so many nightmares it’s scary. I was wondering if anybody did well on treatment and you just answered my question and I really it ! I’m always here if you need a friend to go through this I start like I said in June
Thank you.
I have kefir which have to make sure I separate one hour from antibiotics.
ID doctor said will have to keep track of my hypothyroidism cause might need to change dose of synthroid.
At one time I was 220.
I joined weight watchers and lost about 30 pounds.
Then started losing weight from 160 to 130 which I thought was because of everything closing due to covid. Now I'm 110 on a good day. Maybe that's why they want me to start the antibiotics and not just the nebulizer and aerobika.