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How MAC patients have tolerated taking the 3 antibiotics

Posted by sallyb827 @sallyb827, Oct 31, 2022

sallyb827 | @sallyb827 | 17 minutes ago
I was diagnosed with Bronchiectasis and MAC in 2017. CT scan showed improvement in 2020. Now the CT scans and breathing tests indicate the disease is worse and the Docs want me to start the 3.
I am terrified of taking 3 antibiotics a day. I have IBS-D already and 3 antibiotics a day will make it worse. I fear living my life in the bathroom.
How have other people tolerated the antibiotics?
I have started exercising pretty heavy again ( slowed down during COVID) to move the mucous and bacteria out.
I take a lot of natural supplements including Enteragam(prescription drug) and probiotics daily. It keeps my IBS under control.

Any comments on how you tolerated the 3 would be helpful!

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Mary | @mjb24 | Jul 30 10:03pm
In reply to @jeanettegm5 "I also started to take the three antibiotics a little over a month now but had..." + (show)
@jeanettegm5

I also started to take the three antibiotics a little over a month now but had such problems with Rifampin that my doctor took me off of that one and we added arikayce and I seem to be tolerating that quite well.
I do have extreme fatigue lightheadedness and this nauseous feeling shortly after taking the two antibiotics also some pains in the calf of my leg especially when getting up in the morning. I am 82 years old and very underweight 5’6”and 101 pounds. I have lost so much weight and I am so frail now I’m afraid to go anywhere by myself. I cannot walk into a store without being so out of breath I have to sit down. Had to start using a walker which I never had to do before.
My disease started in 2018 I was treated for 12 months with just two antibiotics by my pulmonologist. Seem to get better but came back about a year ago with a vengeance this time. A few of the Nodules grew to 15 and 17 showed up on my last CT scan so was referred to a ID doctor. He did say two antibiotics to treat disease is not enough I should’ve been put on three. I couldn’t stay on the Rifampin more than a year the first time around the second time I couldn’t tolerate it more than two weeks. So I’m hoping this treatment of two antibiotics and Arikayce well shrink the nodules and restore my health at least to some extent, anything would be better than what I have now.

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@jeanettegm5 I had serious fatigue also. I was unable to stay at work all day and would come home and nap for 3 hours, have dinner and then go to bed. After
3 weeks of being on the Arikayce I am not near as fatigued and have been steadily increasing my hours at work again. I am also coughing less and able to sleep in my bed for most of the night.
Either the antibiotics are finally doing something or the Arikayce has made a difference. Hopefully you will continue to tolerate the antibiotics and start to feel a little better soon.

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1 reply
jeanettegm5 | @jeanettegm5 | Jul 31 8:06am
In reply to @mjb24 "@jeanettegm5 I had serious fatigue also. I was unable to stay at work all day and..." + (show)
@mjb24

@jeanettegm5 I had serious fatigue also. I was unable to stay at work all day and would come home and nap for 3 hours, have dinner and then go to bed. After
3 weeks of being on the Arikayce I am not near as fatigued and have been steadily increasing my hours at work again. I am also coughing less and able to sleep in my bed for most of the night.
Either the antibiotics are finally doing something or the Arikayce has made a difference. Hopefully you will continue to tolerate the antibiotics and start to feel a little better soon.

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Thank you for your reply, yes I am definitely hopeful that the new inhaled antibiotic will make a difference. I have read and have heard from quite a few that have been on it that it is helping. So my hopes are up that eventually i’ll see an improvement, especially in the fatigue . It’s good to hear that you have improved.

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grannylu | @grannylu | Jul 31 9:42am

Please let us know how you r doing on the 3 antibiotics. I also have MAC and IBS-d and scared to take the antibiotics. Thank you

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2 replies
pfurcht123 | @pfurcht123 | Jul 31 5:58pm

is there a reason that most of you spread out the dosing of the antibiotics? the instructions on the bottles didn't give any specific instructions so I take them all at once at nite. I am wondering if I should have been instructed to take them separately throughout the day or is that just personal preference?

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3 replies
Mary | @mjb24 | Jul 31 8:13pm
In reply to @pfurcht123 "is there a reason that most of you spread out the dosing of the antibiotics? the..." + (show)
@pfurcht123

is there a reason that most of you spread out the dosing of the antibiotics? the instructions on the bottles didn't give any specific instructions so I take them all at once at nite. I am wondering if I should have been instructed to take them separately throughout the day or is that just personal preference?

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@pfurcht123According to the information sheet I received with my prescriptions and what I read online when researching each antibiotic Azithromycin and Ethambutol can be taken with or without food. Rifampin should be taken on 1 hour before or 2 hours after a meal. Also, the probiotic should be taken 4 hrs or more before/after the antibiotics. I was afraid to take all this on an empty stomach so I started with Azithromycin and Ethambutol in the morning after breakfast. I take the probiotic at 12N so it's a good 4 or 5 hours later. Then I do the Arikayce at 5PM . We finish dinner typically by 6:30 so then I take the Rifampin at 9:00 before bed. I was nauseous the first couple of weeks so I bought some acupressure wrist bands which did help. After a few weeks the nausea went away and this schedule works well for me.

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Mary | @mjb24 | Jul 31 8:31pm
In reply to @grannylu "Please let us know how you r doing on the 3 antibiotics. I also have MAC..." + (show)
@grannylu

Please let us know how you r doing on the 3 antibiotics. I also have MAC and IBS-d and scared to take the antibiotics. Thank you

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@grannylu I was concerned about the antibiotics also but I did my research and feel comfortable with my ID doctor as he definitely has experience treating MAC. I had my baseline hearing and vision test done. He will be regularly monitoring both along with blood work so I feel comfortable that if something starts to go wrong we will catch it before too much damage is done. I have multiple cavities, one measuring 11cm. I believe this is because I have had this disease for a long time before it was caught. I have now seen the damage it can cause and understand how important it is to try to eradicate it before further damage is done. As long as you are monitored closely and do your best to adhere to the guidelines, my humble opinion is that not treating is more of a risk than treating.

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1 reply
Rick | @rstel7272 | Aug 1 7:04am
In reply to @pfurcht123 "is there a reason that most of you spread out the dosing of the antibiotics? the..." + (show)
@pfurcht123

is there a reason that most of you spread out the dosing of the antibiotics? the instructions on the bottles didn't give any specific instructions so I take them all at once at nite. I am wondering if I should have been instructed to take them separately throughout the day or is that just personal preference?

Jump to this post

Whatever works for you as long as rifampin is taken without food. For me, all spread apart as much as possible with AZ with a big dinner

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Nancy C | @nac1 | Aug 1 8:40am

How are you feeling taking all three antibiotics?

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grannylu | @grannylu | Aug 1 11:04am
In reply to @mjb24 "@grannylu I was concerned about the antibiotics also but I did my research and feel comfortable..." + (show)
@mjb24

@grannylu I was concerned about the antibiotics also but I did my research and feel comfortable with my ID doctor as he definitely has experience treating MAC. I had my baseline hearing and vision test done. He will be regularly monitoring both along with blood work so I feel comfortable that if something starts to go wrong we will catch it before too much damage is done. I have multiple cavities, one measuring 11cm. I believe this is because I have had this disease for a long time before it was caught. I have now seen the damage it can cause and understand how important it is to try to eradicate it before further damage is done. As long as you are monitored closely and do your best to adhere to the guidelines, my humble opinion is that not treating is more of a risk than treating.

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Thank you for responding. Reassuring. Maybe I can keep going with just lung clearance!

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grannylu | @grannylu | Aug 1 11:07am
In reply to @grannylu "Please let us know how you r doing on the 3 antibiotics. I also have MAC..." + (show)
@grannylu

Please let us know how you r doing on the 3 antibiotics. I also have MAC and IBS-d and scared to take the antibiotics. Thank you

Jump to this post

Still just doing lung clearance. Hoping I won’t have to go to antibiotics. I just have such a sensitive stomach.

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