has anybody taken azithromycin and amikacin

Posted by lili56 @lili56, Apr 6, 2023

I have MAC and bronchiectasis. started on azithromycin 500 mg yesterday and I am starting 3 days a week amikacin infusion tomorrow. Does anybody know what side effects to expect from these two meds and how toreduce at least some of them. My doctor said to let her know if I feel any ringing in my ears. I am still learning about my illness and future does frighten me.

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@lili56

thank you for your response and sharing concerns. I am starting rifabutin 300 mg after a week of taking azithromycin and then after another week ethambutol 400 mg. I tried the three antibiotics together in November and got very high fever- my doctor thought it could be the reaction to the meds. The treatment was stopped and I am starting it again but this time she decided it would be one of the three at a time so that we could watch for any adverse reaction. As far as the hearing test, she did not mention hearing test- i was only advised to watch for ringing in my ears and if i notice it I should let them know right away. Well, is it the right course of the treatment? I do not know, I can only hope because it seems to be a rocky road for me- I already changed a pulmonologist. How did you deal with diarrhea? I take a probiotic and eat yogurt and hope it prevents the worst. Are you still taking meds or are you already well? I am still learning how to deal with the thought of being ill and I am only at the beginning of this road. So thank you for your response- i am going to ask for the hearing test and ask about the risk of antibiotic resistance.

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My ID doctor has me taking a hearing test and a vision test every two months
and a liver panel every month. And a triple sputum test every two months.
Harry

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@lili56

thank you for your response and sharing concerns. I am starting rifabutin 300 mg after a week of taking azithromycin and then after another week ethambutol 400 mg. I tried the three antibiotics together in November and got very high fever- my doctor thought it could be the reaction to the meds. The treatment was stopped and I am starting it again but this time she decided it would be one of the three at a time so that we could watch for any adverse reaction. As far as the hearing test, she did not mention hearing test- i was only advised to watch for ringing in my ears and if i notice it I should let them know right away. Well, is it the right course of the treatment? I do not know, I can only hope because it seems to be a rocky road for me- I already changed a pulmonologist. How did you deal with diarrhea? I take a probiotic and eat yogurt and hope it prevents the worst. Are you still taking meds or are you already well? I am still learning how to deal with the thought of being ill and I am only at the beginning of this road. So thank you for your response- i am going to ask for the hearing test and ask about the risk of antibiotic resistance.

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I, too, have MAC and Bronchiectasis. I am 10 weeks in with treatment for MAC. I started Amikacin (via specialized nebulizer) Azithromycin, Ethambutol, and Rifampin all within the same week. I am much more sick now than I was when I started taking these medications. I have a cough. I completely lost my voice. I have ringing in my ears. I’m so short of breath that I need to use supplemental oxygen 24/7. I wake up with a horrific headache every single day. I have no appetite at all. I have nausea, diarrhea, and dizziness. My provider told me that the side effects will ease as I get further into the treatment. I’m not sure I believe that. I have been this sick since week two except that my voice returned in week 8 and I have had significant weight loss (I am 5’4” tall and have gone from 121 pounds to 97 pounds as of today). I literally feel like I am dying and I’m scared.

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@tackettc

I, too, have MAC and Bronchiectasis. I am 10 weeks in with treatment for MAC. I started Amikacin (via specialized nebulizer) Azithromycin, Ethambutol, and Rifampin all within the same week. I am much more sick now than I was when I started taking these medications. I have a cough. I completely lost my voice. I have ringing in my ears. I’m so short of breath that I need to use supplemental oxygen 24/7. I wake up with a horrific headache every single day. I have no appetite at all. I have nausea, diarrhea, and dizziness. My provider told me that the side effects will ease as I get further into the treatment. I’m not sure I believe that. I have been this sick since week two except that my voice returned in week 8 and I have had significant weight loss (I am 5’4” tall and have gone from 121 pounds to 97 pounds as of today). I literally feel like I am dying and I’m scared.

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I forgot to mention that all of the antibiotics except the Amikacin are each 500 mg.

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@tackettc

I, too, have MAC and Bronchiectasis. I am 10 weeks in with treatment for MAC. I started Amikacin (via specialized nebulizer) Azithromycin, Ethambutol, and Rifampin all within the same week. I am much more sick now than I was when I started taking these medications. I have a cough. I completely lost my voice. I have ringing in my ears. I’m so short of breath that I need to use supplemental oxygen 24/7. I wake up with a horrific headache every single day. I have no appetite at all. I have nausea, diarrhea, and dizziness. My provider told me that the side effects will ease as I get further into the treatment. I’m not sure I believe that. I have been this sick since week two except that my voice returned in week 8 and I have had significant weight loss (I am 5’4” tall and have gone from 121 pounds to 97 pounds as of today). I literally feel like I am dying and I’m scared.

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I also declined to mention that my pulmonologist put me on Azithromycin 250 mg in 2022 but my ID doctor took me off of it when I was in the hospital this past July before he ordered a sputum sample. He didn’t restart it until 10 weeks ago when he put me on 500 mg daily along with the Ethambutol 500 mg and the Rifampin 500 mg.

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Hi. I've been on the big three (azithromyacin, rifampin and ethambutol) plus the arikayce in the special nebulizer. I've done this twice for over 2 years each, and was infection feee for a time. I had the same issues as you are facing, tho eventually they did get better. I now have MAC again and may not take the antibiotics.

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@bdr

Hi. I've been on the big three (azithromyacin, rifampin and ethambutol) plus the arikayce in the special nebulizer. I've done this twice for over 2 years each, and was infection feee for a time. I had the same issues as you are facing, tho eventually they did get better. I now have MAC again and may not take the antibiotics.

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Has anyone been offered surgery

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I did the big three drug resistant to azithromycin. Now I have a new treatment plan. Amikacin infusions and 4 oral antibiotics

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I can understand. I am supposed to start infusions also 4 oral antibiotics. I am afraid also

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I am now 70 years old. I have been an athletic person my whole life. I am also a big gardener and had a horse ranch in California for 22 years. I have had a cough my whole life. I moved to Florida in 2019 and I was diagnosed with MAC and Bronchiectasis in Dec of 2022. I was started on Clarithromycin, Ethambutol and Rifibutin. I was so sick the first two weeks, I thought I was going to die. Every time I ate, 15mins later I had the worst pain in my stomach and couldn't move. At my doctor's suggestion, I started taking only one drug at a time to see which one was making me sick . We determined it was the Rifibutin that was making me sick, and I was put on the Rifampin instead. The Ethambutol was 3 times a day, the other two twice daily. I had no problems with those three and was on them until June or 2024. I had numerous CT's and sputum tests during that time. I had 2 negative sputum tests, then they all started being positive. I also had cavities in my left lung that were getting bigger. My doctor told me the drugs were resistant to the MAC so we needed to do something else. I got a picc line and did IV Amikacin twice daily and Imipenem Cilastatin 3 times daily. I did these infusions myself and had bloodwork done weekly. I had no issues with these drugs. Through all of this I can honestly say I never felt that bad. I did have some fatigue by the middle of the day, so I would just take a nap. I continued to work part time and walked at least 3miles a day, exercised, rode my horse and played tennis - yes, with a picc line. After 4 months of the IV drugs, I had a negative sputum test! Progress! But, my doctor was worried about the cavities because one had gotten larger through all of this and referred me to thoracic surgeon. He suggested robotic surgery to remove the cavity because he thought it was harboring the bacteria. My pulmonologist agreed. I was very much on the fence about doing the surgery but went ahead with it. 3 days in the hospital, I have never had a major surgery before, and recovery for me was slow - I wanted too much too quickly. I was back walking after a week, but getting back to my normal routine took at least 4 weeks. My pulmonologist told me he wanted to put me on another IV drug, (I forget the name) along with an oral -Linezolid, after the surgery. He said it would be for 12 months - after I had 3 neg sputum tests. All of the pathologies from my surgery came back negative. So that gave me 2 neg tests. I told my doctor I would give him 6mths of the IV drugs, but if my 3rd test was negative, I would do IV drugs for 3 months and the oral for as long as he wanted. I am still waiting on the test results, which I should have in a week. I never started the IV drug, because I found out my copay was $653. 00 for 8 days. I told my doctor there was no way I could afford that, so I wanted to get my picc line taken out. Since my surgery, I have been on just the Linezolid.
The one issue I have now, is I cannot seem to gain any weight. My appetite has not changed, and I am trying to eat more protein. I was at 124-126, now I am at 117-119, which is not enough for a 5"8 person. I have always been thin, but this is too thin. Otherwise, I am feeling good.
This disease is hard to deal with, because the treatment is so long. But you have to be your own advocate. Ask questions and get other opinions from other doctors. My pulmonologist had not dealt with MAC before. He told me he had never worked so hard on a case. Looking back, would I say yes to the surgery? I'm not so sure. Linezolid is not an antibiotic that cures anything but make the bacteria unable to reproduce. So if MAC is still hiding somewhere in my lungs, hopefully it won't get worse. That's my story.

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@lbabbitt

I am now 70 years old. I have been an athletic person my whole life. I am also a big gardener and had a horse ranch in California for 22 years. I have had a cough my whole life. I moved to Florida in 2019 and I was diagnosed with MAC and Bronchiectasis in Dec of 2022. I was started on Clarithromycin, Ethambutol and Rifibutin. I was so sick the first two weeks, I thought I was going to die. Every time I ate, 15mins later I had the worst pain in my stomach and couldn't move. At my doctor's suggestion, I started taking only one drug at a time to see which one was making me sick . We determined it was the Rifibutin that was making me sick, and I was put on the Rifampin instead. The Ethambutol was 3 times a day, the other two twice daily. I had no problems with those three and was on them until June or 2024. I had numerous CT's and sputum tests during that time. I had 2 negative sputum tests, then they all started being positive. I also had cavities in my left lung that were getting bigger. My doctor told me the drugs were resistant to the MAC so we needed to do something else. I got a picc line and did IV Amikacin twice daily and Imipenem Cilastatin 3 times daily. I did these infusions myself and had bloodwork done weekly. I had no issues with these drugs. Through all of this I can honestly say I never felt that bad. I did have some fatigue by the middle of the day, so I would just take a nap. I continued to work part time and walked at least 3miles a day, exercised, rode my horse and played tennis - yes, with a picc line. After 4 months of the IV drugs, I had a negative sputum test! Progress! But, my doctor was worried about the cavities because one had gotten larger through all of this and referred me to thoracic surgeon. He suggested robotic surgery to remove the cavity because he thought it was harboring the bacteria. My pulmonologist agreed. I was very much on the fence about doing the surgery but went ahead with it. 3 days in the hospital, I have never had a major surgery before, and recovery for me was slow - I wanted too much too quickly. I was back walking after a week, but getting back to my normal routine took at least 4 weeks. My pulmonologist told me he wanted to put me on another IV drug, (I forget the name) along with an oral -Linezolid, after the surgery. He said it would be for 12 months - after I had 3 neg sputum tests. All of the pathologies from my surgery came back negative. So that gave me 2 neg tests. I told my doctor I would give him 6mths of the IV drugs, but if my 3rd test was negative, I would do IV drugs for 3 months and the oral for as long as he wanted. I am still waiting on the test results, which I should have in a week. I never started the IV drug, because I found out my copay was $653. 00 for 8 days. I told my doctor there was no way I could afford that, so I wanted to get my picc line taken out. Since my surgery, I have been on just the Linezolid.
The one issue I have now, is I cannot seem to gain any weight. My appetite has not changed, and I am trying to eat more protein. I was at 124-126, now I am at 117-119, which is not enough for a 5"8 person. I have always been thin, but this is too thin. Otherwise, I am feeling good.
This disease is hard to deal with, because the treatment is so long. But you have to be your own advocate. Ask questions and get other opinions from other doctors. My pulmonologist had not dealt with MAC before. He told me he had never worked so hard on a case. Looking back, would I say yes to the surgery? I'm not so sure. Linezolid is not an antibiotic that cures anything but make the bacteria unable to reproduce. So if MAC is still hiding somewhere in my lungs, hopefully it won't get worse. That's my story.

Jump to this post

Thank you for your story. I see my primary care physician later today and I have to decide what is going to be the best thing for myself, to be my own advocate. Treatment, no treatment, what to do next…

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