MAC Antibiotic Medication: What time schedule works best for you?

Posted by suzylulu @suzylulu, Nov 8, 2018

When is/are the time schedules for taking the big 3 that have worked for readers. Thanks

@bmiller57 Yes, you can take them all at night. However, you may end up with sleep disturbances due to ethambutol and azithromycin. You have to modify and adjust based on your body’s reaction to the Big3. Because of your spine condition please be proactive about eye exams due to taking ethambutol. A side effect of your AS is inflammation of the optic nerve which can happen with ethambutol as well. It is usually dose related. Wishing you good health one day at a time! irene5

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@bmiller57

i have been on the big 3 for a week now Ethambutol 2 pills a day Rifampin 2 pills a day and Azithromycin 1 pill a day my question is has anyone took these in the evening i am suffering from the common side effects nausia, diziness, headaches, during the day it makes it very hard to function in ant way my dosage is the 5 pills a day 3 times a week i have noticed on my day off no side effects thats why i am asking about taking all at bedtime ???

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Hi @bmiller57, you may notice that I moved your discussion and combined it with this existing discussion on MAC Antibiotic Medication. I did this to introduce you to other members talking about what time of day is best to take MAC medications. Click on VIEW & REPLY in your email notification to see the past posts as well as the first hand information @irene5 shared.

Irene and Bmiller, have you been taking these medication on an empty stomach, or do you usually take them with food?

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@chloeliucw

Hi @bmiller57, you may notice that I moved your discussion and combined it with this existing discussion on MAC Antibiotic Medication. I did this to introduce you to other members talking about what time of day is best to take MAC medications. Click on VIEW & REPLY in your email notification to see the past posts as well as the first hand information @irene5 shared.

Irene and Bmiller, have you been taking these medication on an empty stomach, or do you usually take them with food?

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@chloeliucw I have to take them with food. irene5

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@bmiller57

i have been on the big 3 for a week now Ethambutol 2 pills a day Rifampin 2 pills a day and Azithromycin 1 pill a day my question is has anyone took these in the evening i am suffering from the common side effects nausia, diziness, headaches, during the day it makes it very hard to function in ant way my dosage is the 5 pills a day 3 times a week i have noticed on my day off no side effects thats why i am asking about taking all at bedtime ???

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@bmiller57 Yes, you can definitely take them at bedtime, like Irene said. That is what I did, on advice of my docs, who said "It's better to take them in a way you can tolerate than to quit because you are miserable." There were some sleep disturbances, but it was more tolerable than feeling miserable all day. It may help you to take them with a cracker or a little dry cereal. Also, try diligently to do your eye and hearing exams in a timely way (hard advice right now) because changes can come at any time while taking the meds.
Also, I found the drugs really hard on my system, so I ate live-culture yogurt and took a probiotic to help replenish the gut bacteria killed by all the antibiotics. Also, due to the nausea I hard virtually no appetite, so I forced myself to eat a small amount of nutritious food every 1-2 hours until early evening. I made a lot of smoothies with extra protein powder, snacked on cheese curds, hard-boiled eggs, Lara Bars, anything calorie-and-nutrient dense that I could find. I have been off the antibiotics now for nearly 4 months, and still have to remind myself to eat, digestive system still not back to normal.
Good luck to you – hang in there.
Sue

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I take mine in the morning, at noon and then dinner time is the azithromicin (sp). Knock on wood, it seems to work for me. Always with a meal.

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@sueinmn

I was initially advised to take the meds at night with yogurt, and that worked for me, but after reading & watching the NJH video (sorry I don't have the link…) I thought I would try the morning/evening empty stomach routine. Well, that was awful! Instead of just feeling lousy the morning after, which I thought was the Rifampin, I was nauseated all day from the other two, then felt just as bad the next day from the Rifampin. That meant I would feel sick about 6 days a week instead of 3 1/2 to 3/4 days…no way to live my life. So, since my symptoms and energy had improved a great deal using the evening routine, I decided that is what works for me. The only change was from taking with yogurt to just a little bit of cracker to avoid coating my stomach completely. I figure if the meds are a little less effective, but I am willing and able to continue the regime for the full 12-15 months, that is better than quitting or skipping doses because I feel terrible. Just my 2 cents worth. My pulmonologist, who has been treating all the MAC patients in a large clinic system for over 20 years, agrees. And I am a big believer in a good probiotic – one that is labeled to have a specially coated capsule so it doesn't dissolve until it reaches the intestine. So far, after 10 months and many courses of antibiotics, I have managed to avoid all but a few days of the diarrhea that used to plague me every time I was on one.

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After all my baseline labs are finished I will be starting the Big 3. I must admit my anxiety level is high although I think it is the right decision. Can you tell me specifically what probiotics you are using?

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@n4seth

After all my baseline labs are finished I will be starting the Big 3. I must admit my anxiety level is high although I think it is the right decision. Can you tell me specifically what probiotics you are using?

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@nseth Sorry, I don't use the same one twice in a row. At the suggestion of one of my providers (don't remember which) I find the ones with the highest number of live cultures, and switch every time I buy, to get the widest variety of bacteria I can. I also look for the capsules that are made to survive the stomach and dissolve in the intestines. The theory is more bacteria survive – if it dissolves fully in the stomach, most are killed by stomach acids.
Sue

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This time around I take rifampin at 5-6:00 AM and then wait an hour and take the other 2 meds (total 5.5 pills) I believe that any more than 3 pills at a time can cause upset stomach. I am now 1 month in and I am doing ok except for the terrible body aches. I get a little nauseated once in a while but just eat a little something.

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I am on the big 3 for MAC and taking a probiotic called Florastor. A doctor had recommended it for someone ?? on Mayo because it is yeast based and unaffected by all those antibiotics. Theoretically bacteria based probiotics could be killed before they have a chance to do any good. I buy them on Amazon. Bill

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@suzylulu

Thanks for answers

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@suzylulu Hi there! Try reading posts from @katemn There is a lot of info she left for us to follow concerning taking these meds.

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@n4seth

After all my baseline labs are finished I will be starting the Big 3. I must admit my anxiety level is high although I think it is the right decision. Can you tell me specifically what probiotics you are using?

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@n4seth Having anxiety about all this is perfectly understandable. My ID doctor does not recommend probiotics. However, I have learned an immeasurable amount of information on this site about them and have found that IMD complete probiotics platinum (Amazon) are excellent and also pricey. Hyper biotics pro-women are good (Amazon) as well. I have decided to use NOW probiotics and some of that company’s vitamins based on info provided by a previous mentor, Katherine. I also use Pure encapsulations vitamins (a company based in Massachusetts). I knew nothing coming onto this site, but have learned so much from the journey of other members. Good luck. irene5

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@irene5

@n4seth Having anxiety about all this is perfectly understandable. My ID doctor does not recommend probiotics. However, I have learned an immeasurable amount of information on this site about them and have found that IMD complete probiotics platinum (Amazon) are excellent and also pricey. Hyper biotics pro-women are good (Amazon) as well. I have decided to use NOW probiotics and some of that company’s vitamins based on info provided by a previous mentor, Katherine. I also use Pure encapsulations vitamins (a company based in Massachusetts). I knew nothing coming onto this site, but have learned so much from the journey of other members. Good luck. irene5

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Thank you Irene! This was very helpful….seems like it would be worth a try. During normal times, there would be so many wonderful distractions available, but Safe at Home doesn't give my anxiety any place to go! This too shall pass-right?

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