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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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aprado31 | @aprado31 | Apr 12 10:46am
In reply to @mokie "I was on the "big 3" for 18 months a number of years ago. While the..." + (show)
@mokie

I was on the "big 3" for 18 months a number of years ago. While the treatment did not significantly abate my MAC, I did not think the drug regimen that difficult. I read that it is hard for others, but I'm not sure what the symptoms are that they are experiencing. Could someone fill me in?

I do admit that I was supposed to take 3 ethambutol at once, and I didn't know that, so I spaced them out throughout the day. My physician did not see that as a problem (but I think my new doctor does). I remember being tired from the drugs and quite crabby from them. I had dialarhoea as well. Other than that, I was fine. Because I have acid reflux (GERD), I also was on Nexium, and I sometimes felt that maybe the Nexium helped me tolerate the other medicine, but I have no scientific evidence. I also have bronchiectasis.

Today I am starting another year-long regimen with Ethambutol, Rifabutin (with Clofazimine and Amikacin to be added soon--a week or so). I have cavities in my lungs, but I do not cough up much sputum. I am scared of the Clofazimine and Amikacin. If anyone has experience with these, please let me know.

Best regards, and thanks to all of you for sharing,
Mokie

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I took clofazamine for about a month, it was an alternative treatment because I could not tolerate azithromycin which had caused hearing loss.
Clofazaminr caused me to become seriously constipated, and I had to go to an urgent care center because I had developed significant intestinal blockage.
I am no longer on clofazamine . . If you take clofazamine, perhaps you should take steps to prevent constipation before it develops .

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1 reply
mokie | @mokie | Apr 12 9:20pm

Thank you so much for the feedback. Did you ever use sodium chloride with the Arikayce? I read somewhere on this site that adding it to the dose reduced throat issues.

I wish you all the best,
Mokie

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mokie | @mokie | Apr 12 9:25pm
In reply to @aprado31 "I took clofazamine for about a month, it was an alternative treatment because I could not..." + (show)
@aprado31

I took clofazamine for about a month, it was an alternative treatment because I could not tolerate azithromycin which had caused hearing loss.
Clofazaminr caused me to become seriously constipated, and I had to go to an urgent care center because I had developed significant intestinal blockage.
I am no longer on clofazamine . . If you take clofazamine, perhaps you should take steps to prevent constipation before it develops .

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Thank you for the feedback about clofazimine! I had heard it can cause blockage, but didn't know much about this. I feel for you. That must have been very difficult. I hope you're doing better with your treatment.

Mokie

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pa 111 | @pagechapman | Apr 13 9:22am

Yes, Nausea and vomiting occurred when I first stared taking it. That has been corrected by an anti nausea prescription called Ondansetron, I take it 12/3 hours before taking the Nuzyra

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nonamebrand | @nonamebrand | Apr 13 10:05am

I was warned that this would not be fun and it certainly isn't .Drs said I might have had this for years and I never had any symptoms still don't but am now on two meds ..ethambutol and anzithromycin .and I feel terrible .I don't know how much more I can take ..only took them on advice that the cachexia I now have will go by doing the meds ..it took me a month of very low dose of ethambutol to start since I'm down to 80 lbs .and then bumped up to two pills per night ...took a month to get used to that ,now the anzithromicin is a half dose and my appetite is now totally gone !!! So back to not eating .Seeing Dr on Mon and hoping he has the good sense to put me on a three times a week schedule so I can take a day off now and then .This every day thing is killing me ..18 months of this ??? No way I nor my husband can handle this !!!😥

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2 replies
nonamebrand | @nonamebrand | Apr 13 12:51pm
In reply to @lauraadam2425 "I am 77 and was put on the big 3 2 years ago. After 9 months..." + (show)
@lauraadam2425

I am 77 and was put on the big 3 2 years ago. After 9 months I was taken off Ethambutol for eye problems and Arikayce was added. After 10 months I was taken off Arikayce because of a terrible cough and dizzyness. I am still on Arzithromycin and Rifamkin with little problems but take them 3 to 4 hrs apart, Nuzyra was added this week and I get very neusas after taking it to the point where I have to lay down for half hour. Has anyone else taken this drug and had the same effect?

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I'm 73 perfectly healthy woman who started losing weight after being put on tramadol for chronic back pain .Went from 118lbs down to 90 the to 80 lbs in less than a year after two trips to the hospital and being diagnosed with severe depression just sent home with a bunch of antidepressants which I couldn't take finally the md there called in a scan pulmonary Dr said she knew immediately what it was ,this could have been diagnosed a few years ago and could have been easier to deal with if I had better Drs !! Bad doctoring is everywhere but Florida is the worst !!! Can't believe how much I'm suffering and it's just beginning ,I just want to feel normal just for one day !!! 😥

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marthamac | @marthamac | Apr 13 2:09pm
In reply to @lauraadam2425 "I am 77 and was put on the big 3 2 years ago. After 9 months..." + (show)
@lauraadam2425

I am 77 and was put on the big 3 2 years ago. After 9 months I was taken off Ethambutol for eye problems and Arikayce was added. After 10 months I was taken off Arikayce because of a terrible cough and dizzyness. I am still on Arzithromycin and Rifamkin with little problems but take them 3 to 4 hrs apart, Nuzyra was added this week and I get very neusas after taking it to the point where I have to lay down for half hour. Has anyone else taken this drug and had the same effect?

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I have been taking Nuzyra for a year now. I take it at bedtime, 3.5 to 4 hours after dinner on an empty stomach, and sit up for 15 minutes after taking, then to bed with head up at 30 degrees.

It made me throw up so my doctors gave me Zofran to take 30 minutes before the Nuzyra. I’m very regular about it and have only had “breakthrough nausea” a couple of times.

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lauraadam2425 | @lauraadam2425 | Apr 13 6:56pm
In reply to @marthamac "I have been taking Nuzyra for a year now. I take it at bedtime, 3.5 to..." + (show)
@marthamac

I have been taking Nuzyra for a year now. I take it at bedtime, 3.5 to 4 hours after dinner on an empty stomach, and sit up for 15 minutes after taking, then to bed with head up at 30 degrees.

It made me throw up so my doctors gave me Zofran to take 30 minutes before the Nuzyra. I’m very regular about it and have only had “breakthrough nausea” a couple of times.

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I have been on Nuzyra now only 3 days and so sick about 10 to 15 minutes after taking it. I take it the minute I get up as have to wait 4 hours before I can take my regular morning meds as they would react if taken sooner. I was so sick the 3rd day I thought my husband was going to have to take me to the ER, I get nausea and my stomach feels like someone was punching me in the stomach and stabbing me with a knife. Then I get terrible diarrea for 3 hours. Will this stop after being on it for a few weeks? By mid-morning I am pretty good but nausua off and on.

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ralphcmtrust | @ralphcmtrust | Apr 13 8:31pm
In reply to @tinaesims "I split mine up. I am also on synthroid so when I wake up, I take..." + (show)
@tinaesims

I split mine up. I am also on synthroid so when I wake up, I take it. I wait 2 hours and take my first dose of ethambutol and my only dose of azithomycin. Before I go to bed I take my other dose of ethambutol and rifampin. I have not had gut issues and I've been on for a year. I do have ringing in my ears and it wouldn't matter what time of day I took my drugs for that. I am on 3 times a week too but they are talking about going to daily. If someone has a better regimen I'd like to hear it too. The rifampin was interfering with my synthroid. It seems to be working giving a 2 hour split.

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I am in my 2nd month.
I take all mine after lunch (2-cap Rif, 1-tab Eth, & 3-tab Azi) 3 X/wk
Per my Dr. I was advised to take my Synthroid before bed or 1/2 hour before breakfeast.

Other than very tired & felling like shit from coughing, no serious problems.
Ralphcm

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marthamac | @marthamac | Apr 14 7:50am
In reply to @lauraadam2425 "I have been on Nuzyra now only 3 days and so sick about 10 to 15..." + (show)
@lauraadam2425

I have been on Nuzyra now only 3 days and so sick about 10 to 15 minutes after taking it. I take it the minute I get up as have to wait 4 hours before I can take my regular morning meds as they would react if taken sooner. I was so sick the 3rd day I thought my husband was going to have to take me to the ER, I get nausea and my stomach feels like someone was punching me in the stomach and stabbing me with a knife. Then I get terrible diarrea for 3 hours. Will this stop after being on it for a few weeks? By mid-morning I am pretty good but nausua off and on.

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I don’t think my nausea /cramping response to the Nuzyra has changed at all after taking it for a year. If I premeditate with the Zofran half an hour before taking it I rarely have an issue though. At least that's my impression. I never skip the Zofran. But once in awhile it doesn’t work for some reason. Maybe I don’t get the timing just right, or my stomach is more or less empty than usual, or who knows. Then I’m in for at least an hour of incapacitating and miserable GI stuff.

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