1. < MAC & Bronchiectasis

Any good results from taking Amikacin?? and what were side effects?

Posted by gaylewroc @gaylewroc, Feb 4, 2019

I am new to this forum, but not new to bronchiectasis and MAC.I had my first sign of bronchiectasis in 2000, finally diagnosed in 2011 and.by then I also had a MAC infection. Took the triple cocktail for two years (2012-2014) until my vision started to be affected. I've been on and off various antibiotics the last few years but now since October I've been having more flares and last week CT scan shows disease progression. My ID Doc retired from private practice..and I've only had my PC and Pulmonologist..I'm about to get a referral to a new ID...no specialization in MAC..and I don't know what to expect. I will no longer take many of the drugs because of side effects that were pretty severe. So...big question....Who here has taken Amikacin??? and what kind of side effects did you have?? I am most likely going to Mayo in Jacksonville but I know my options are really limited. I just want some insight. Thanks.

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heathert | @heathert | Feb 11, 2019
In reply to @suzyqueue "I'm very happy to hear about your experience with the Amikacin. I'm getting ready to start..." + (show)
@suzyqueue

I'm very happy to hear about your experience with the Amikacin. I'm getting ready to start it tomorrow and am anxious but feel good about trying it.

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@suzyqueue I hope all goes great for you, dont forget to eat well and exercise.

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1 reply
heathert | @heathert | Feb 11, 2019
In reply to @gaylewroc "@heather. Ugh, I was on the 3 drugs for a little over 2 years. Until I..." + (show)
@gaylewroc

@heather. Ugh, I was on the 3 drugs for a little over 2 years. Until I had pulsating blind spots and I would get lost when driving. I was a Realtor and I had to stop working. The Docs then put me on Cipro and I felt like I was dying. I stopped taking everything and started juicing and eating super clean, fruits vegetables nuts & seeds. My cultures were still positive but I built myself back up. I was doing pretty good until this past fall after a trip to the beach. Just not feeling well..and I've gone downhill ever since. I guess its time to get back on the drugs now but I dread it. I just hope if I have to take the Amikacin I can get the inhaled type..I know some people need a port put in for IV and I would hate that!! I'm seeing new Doc at Emory in Atlanta next month. I'm going to try to stay positive!! Thanks for the positive info!!

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@gaylewroc Eating well is a big part of this so good on you, any stress is bad for MAC. I hope you go on the inhaled Amikacin also, much less side effects, let us know what they give you. take care. Heather

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suzyqueue | @suzyqueue | Feb 11, 2019
In reply to @heathert "@suzyqueue I hope all goes great for you, dont forget to eat well and exercise." + (show)
@heathert

@suzyqueue I hope all goes great for you, dont forget to eat well and exercise.

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OMGosh. Yes. Eating is very important. My issue is that it doesn't matter how good, how much or how healthy I eat, it's very difficult for me to gain weight. I do try though. I go to the gym and do NO cardio but all weight resistance to try to gain as well.

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2 replies
heathert | @heathert | Feb 11, 2019
In reply to @suzyqueue "OMGosh. Yes. Eating is very important. My issue is that it doesn't matter how good, how..." + (show)
@suzyqueue

OMGosh. Yes. Eating is very important. My issue is that it doesn't matter how good, how much or how healthy I eat, it's very difficult for me to gain weight. I do try though. I go to the gym and do NO cardio but all weight resistance to try to gain as well.

Jump to this post

@suyqueue, if you really need to put on weight, I got fortisip drinks (not powder, its icky) from my dr, you can get it on line.

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1 reply
suzyqueue | @suzyqueue | Feb 11, 2019
In reply to @heathert "@suyqueue, if you really need to put on weight, I got fortisip drinks (not powder, its..." + (show)
@heathert

@suyqueue, if you really need to put on weight, I got fortisip drinks (not powder, its icky) from my dr, you can get it on line.

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Great to know. I may try those too on top of the Ensure Clear and Muscle Milk I already use.

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allegres | @allegres | Feb 12, 2019
In reply to @suzyqueue "I'm very happy to hear about your experience with the Amikacin. I'm getting ready to start..." + (show)
@suzyqueue

I'm very happy to hear about your experience with the Amikacin. I'm getting ready to start it tomorrow and am anxious but feel good about trying it.

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@suzyqueue, will you take Amikacin alone? I can't tell from the discussion whether it is always prescribed with the big three or if it can be taken alone. This important to me since I can't take Rifampin. Thanks!

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1 reply
suzyqueue | @suzyqueue | Feb 12, 2019
In reply to @allegres "@suzyqueue, will you take Amikacin alone? I can't tell from the discussion whether it is always..." + (show)
@allegres

@suzyqueue, will you take Amikacin alone? I can't tell from the discussion whether it is always prescribed with the big three or if it can be taken alone. This important to me since I can't take Rifampin. Thanks!

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Yes. I've been on the "big 3" since January 2018. It did keep my condition from getting worse I believe or at least slow it down but that's it. I have a 10 cm. cavity in my upper left lobe of my lung which was supposed to be removed surgically this past Wednesday. However I was hospitalized for over a week in December with pneumonia in the right lung. Therefore, surgery postponed and in the meantime adding Amikacin (inhaled) to the big 3. I start the Amikacin tomorrow. (EEEEk - LOL) - See if you can switch to the Rifabutin or one of the other replacement drugs of the Rifampin. The Rifabutin is in the same family but was different for me.

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1 reply
allegres | @allegres | Feb 12, 2019
In reply to @suzyqueue "Yes. I've been on the "big 3" since January 2018. It did keep my condition from..." + (show)
@suzyqueue

Yes. I've been on the "big 3" since January 2018. It did keep my condition from getting worse I believe or at least slow it down but that's it. I have a 10 cm. cavity in my upper left lobe of my lung which was supposed to be removed surgically this past Wednesday. However I was hospitalized for over a week in December with pneumonia in the right lung. Therefore, surgery postponed and in the meantime adding Amikacin (inhaled) to the big 3. I start the Amikacin tomorrow. (EEEEk - LOL) - See if you can switch to the Rifabutin or one of the other replacement drugs of the Rifampin. The Rifabutin is in the same family but was different for me.

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@suzyqueue, Thank you. My doctor substituted Moxifoxacin for Rifampin, but I was unable to take it either. I will ask about trying Rifabutin, but my reaction was dangerous (a dramatic drop in platelet count) so he may not want to risk it. Thanks so much!

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1 reply
suzyqueue | @suzyqueue | Feb 12, 2019
In reply to @allegres "@suzyqueue, Thank you. My doctor substituted Moxifoxacin for Rifampin, but I was unable to take it..." + (show)
@allegres

@suzyqueue, Thank you. My doctor substituted Moxifoxacin for Rifampin, but I was unable to take it either. I will ask about trying Rifabutin, but my reaction was dangerous (a dramatic drop in platelet count) so he may not want to risk it. Thanks so much!

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Uggggh. Yeah...the Rifabutin is in the same family so I'm not sure how he'll feel about that.
Best of luck in finding what works. I got that way with myself. Glad to try the Amikacin now.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 12, 2019
In reply to @suzyqueue "OMGosh. Yes. Eating is very important. My issue is that it doesn't matter how good, how..." + (show)
@suzyqueue

OMGosh. Yes. Eating is very important. My issue is that it doesn't matter how good, how much or how healthy I eat, it's very difficult for me to gain weight. I do try though. I go to the gym and do NO cardio but all weight resistance to try to gain as well.

Jump to this post

@suzyqueue Hello Suzy. Keep doing what you are doing with your diet and exercise. Can you imagine the shape you would be in if you didn't do these things?

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