Big 3 all at same time?

Posted by winema @winema, Jun 15 7:38pm

I'm starting the "big 3" soon and am curious about 2 things. One is about taking all of the meds at the same time (say a couple hours after evening meal)--for me, that's one azithromycin, 2 rifampin, and 4 (400mg) ethambutol. Who has success with that schedule, is that what your doc recommends? I picked up the drugs today, and got no guidance about that from my doc and didn't know to ask the pharmacist. Second question: I read that for my weight (about 55 kg), and taking meds 3x/week, I should be starting with 1200 mg of ethambutol. But doc has prescribed 1600; seems like a lot, given the risk of optical neuritis. I'm not going to start taking anything until I've had base line blood work done (in 2 days) and have my questions answered. I think patient experience is really important and value any input from folks here. Thanks!

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rosefoxx1 | @rosefoxx1 | Jun 19 11:16am

Let me know how it goes. I start treatment. I’m at the doctor right now waiting to find out.

winema | @winema | Jun 19 11:52am

In reply to @rosefoxx1 "Let me know how it goes. I start treatment. I’m at the doctor right now waiting..." + (show)

I've only had one day of meds, will take again today and Sunday. I'm still figuring out timing during the day which fits my schedule. No ill effects so far, but it's only one day. (Well, the bright orange pee is a little disconcerting! But it goes away in 24 hours; it will return when I take the rifampin again.) I followed my doc's recommendations regarding the slightly higher dose of ethabutol because he said treatment success is greater. Good luck to you!

winema | @winema | Jun 19 11:54am

In reply to @amap2025 "Pw?" + (show)

I think she means per week.

rosefoxx1 | @rosefoxx1 | Jun 19 12:03pm

In reply to @winema "I've only had one day of meds, will take again today and Sunday. I'm still figuring..." + (show)

I’ve been through a lot she told me they’re gonna wait on my treatment, but I’d love to follow you and see how you do and give you encouragement because eventually I’ll have to do it

brookebth | @brookebth | Jun 19 7:46pm

In reply to @mjb24 "When I was diagnosed, I had no idea what MAC was and was not given much..." + (show)

Thank you so much!

cd33 | @cd33 | Jun 20 3:33am

In reply to @winema "I think she means per week." + (show)

Yup per week 3 times per week

cd33 | @cd33 | Jun 20 3:40am

In reply to @cd33 "Yes but I’m in Australia and the doc said we don’t follow USA guidelines. Obviously tho..." + (show)

How often are you taking the meds winema

winema | @winema | Jun 20 12:20pm

In reply to @rosefoxx1 "I’ve been through a lot she told me they’re gonna wait on my treatment, but I’d..." + (show)

Definitely, I will let you know. Day 2 was yesterday, again, no upset. Did your doc say why she wants you to delay treatment? I was diagnosed nearly 14 years ago, was asymptomatic for 4 or 5 years after that. PFTs were always good, I'm otherwise in healthy, in good shape, and physically active. N pulmonologist EVER encouraged me to get treatment; all counseled against it. I had several pulmonologists because they kept retiring or moving on to a different hospital or clinic. In 2012, the protocol was 5x/week; that's part of why they were against it b/c of the toxicity and likelihood of recurrence. Now, protocol is 3x/week and current doc, who kept saying "you're doing great" so why treat, finally agreed after bronchoscopy showed definite increase in infection. That matched my subjective experience. Trust yourself, advocate for yourself, trust your doc if s/he has earned that.