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Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Posted by cmi @cmi, Dec 11, 2020

I have just begun my drug therapy for MAC. Question, does anyone have any advice on how to take the cocktail of azithromycin, ethanbutol, & rifampin, and suffer the least discomfort. I am taking my meds at night 4 hrs PO after I go to bed (set alarm clock and wake up to take) 3 days a week. I was very discouraged by pharmacist and ID doctor on how brutal the meds are to the system.

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carolperkins | @carolperkins | Jun 30, 2023

I saw Dr. Richard Andrews. He was the best doctor that I have ever seen. He thinks outside the box. I wish that I still lived there. He’s just north of 120th and Center. He is older and takes time with everybody. His visits last between 15 - 60 minutes. He wants to know every detail about your life.

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1 reply
lauraadam2425 | @lauraadam2425 | Jul 1, 2023

I have been on the big 3 since Aug of 2022 and would get nausea from them. I found that if I take them 3 to 4 hrs apart during the day it isn't quite so bad. I don't take them at night as I have insomnia and only get 3 to 4 hrs sleep a night with a sleeping pill and the more meds you take late can make it harder yo sleep, but everyone is different. I did however stop ethambutal in April as I failed 2 field vision tests in a row. Make sure you have regular hearing and vision tests every 3 to 4 months, not once a year! Good luck1

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annagh | @annagh | Jul 1, 2023

Dr. Winthrop said he tells his patients to take all three at bedtime with a little ice cream and that 85% have no problems. I'm not there yet as probably going to be in single drug clinical trial first.
Anna

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2 replies
dlynn1210 | @dlynn1210 | Jul 1, 2023
In reply to @carolperkins "I saw Dr. Richard Andrews. He was the best doctor that I have ever seen. He..." + (show)
@carolperkins

I saw Dr. Richard Andrews. He was the best doctor that I have ever seen. He thinks outside the box. I wish that I still lived there. He’s just north of 120th and Center. He is older and takes time with everybody. His visits last between 15 - 60 minutes. He wants to know every detail about your life.

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What city is Dr. Andrews located?

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lauraadam2425 | @lauraadam2425 | Jul 2, 2023
In reply to @annagh "Dr. Winthrop said he tells his patients to take all three at bedtime with a little..." + (show)
@annagh

Dr. Winthrop said he tells his patients to take all three at bedtime with a little ice cream and that 85% have no problems. I'm not there yet as probably going to be in single drug clinical trial first.
Anna

Jump to this post

My only concern is that I have insomnia so bad that I only sleep 3 possibly 4 hours at night with no naps during the day or I wouldn't be able to sleep at night. Anyway, I had a dr that told me you want to take as few pills before bed as possible as it could make it hard to sleep. Mac can give you insomnia so I guess that is one of the side effects that I have.I

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1 reply
tconz | @tconz | Jul 2, 2023

I used to split the Big 3 up but when I went to NJH last month they told me I needed to take all together on an empty stomach in the morning to get the best effects. I know everyone can't tolerate that but mixing with food dilutes the medications according to NJH.

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nonamebrand | @nonamebrand | Apr 8 9:02pm
In reply to @cmi "I have an interdisciplinary team of doctors...Pulmonary, ID, Rheumatologist, Ophthalmologist, & ENT, working on my behave,..." + (show)
@cmi

I have an interdisciplinary team of doctors...Pulmonary, ID, Rheumatologist, Ophthalmologist, & ENT, working on my behave, all connected through our health care system. The ID doc is covering the medication page and sees me accordingly. I believe because I am so early on in this...he is waiting to see if I can tolerate this plan. I began with just the two Azithromycin 500 & Ethambutol 1200 ...will add the rifampin 600 on Sunday...this cocktail is 3 xweek. No alternatives have been offered yet. Comments made before beginning this protocol were “not everyone takes treatment “... I however met “qualifications “ low BMI and fear of weight loss, plus the persistent chest & back pains. I guess I am still too early on in this. My doctors are a good, compassionate, & professional team and we communicate easily via a healthcare portal. ID will follow me with labs for liver function...pulmonary for PFT. My next hurdle will be (if I tolerate meds) how to produce sputum for cultures...I have never had fever, cough, or sputum production. My MAC was confirmed after the bronchoscopy.

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I have been put on too many schedules of dosing that I'm getting really upset and confused .my Infectious disease Drs are four on a rotating schedule so I've seen three different Drs in a year .Was down to eighty lbs when I decided to try to kill this ntm because everyone told me the cachexia I now have will begin to go away .and my appetite will return but after two months of a low dose of ethanbutol daily and now anzithromycin a low dose everyday I'm really not sure if this is the right thing .No coughing no diarrhea no sputum as yet but so dizzy I can't get off my bed !!! I must can't function anymore .Drs here are impossible to bet a hold of !! Everyone is becoming to really hate me no support from anyone ..I think I was better off with the ntm as now I see a lifetime of tests more drugs and in the house since covid !!

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nonamebrand | @nonamebrand | Apr 8 9:10pm
In reply to @lauraadam2425 "My only concern is that I have insomnia so bad that I only sleep 3 possibly..." + (show)
@lauraadam2425

My only concern is that I have insomnia so bad that I only sleep 3 possibly 4 hours at night with no naps during the day or I wouldn't be able to sleep at night. Anyway, I had a dr that told me you want to take as few pills before bed as possible as it could make it hard to sleep. Mac can give you insomnia so I guess that is one of the side effects that I have.I

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I have trouble sleeping too Dr told me to take ethanbutol before bed and anzithro in the morning which does not make for a great day or a good night's sleep .I tried different times but no use

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1 reply
suzanne11 | @suzanne11 | Apr 9 1:00am
In reply to @sueinmn "I was on the meds for 18 months, and transitioned early on to taking all 3..." + (show)
@sueinmn

I was on the meds for 18 months, and transitioned early on to taking all 3 at bedtime. It was the only way I could tolerate them because the nausea was otherwise debilitating. Please look at some of the other, older discussions on the forum for suggestions on easing any symptoms you may have, with ginger tea or candies, frequent small meals, and probiotics.
Also, please consider seeing an audiologist for a baseline evaluation of your hearing - I saw mine every 3 months (until Covid) to make sure the meds were not accelerating my hearing loss.
Sue

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Hi Sue,

How are you feelng now?

Did the antibiotics impact your hearing?

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1 reply
suzanne11 | @suzanne11 | Apr 9 1:08am
In reply to @annagh "Dr. Winthrop said he tells his patients to take all three at bedtime with a little..." + (show)
@annagh

Dr. Winthrop said he tells his patients to take all three at bedtime with a little ice cream and that 85% have no problems. I'm not there yet as probably going to be in single drug clinical trial first.
Anna

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How is trial going?

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