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 Hi! I know my mom was very depressed. We tried to get her to come to Alabama and move in with me or my sister. We knew we could get her much better. Even though she hated her husband, she refused to leave. She just really wanted to die and I don't think her Doc had given her an antidepressant. He was horrible!!

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@gaylewroc

@windwalker Hi Terri! I really don't think my mom and aunt lived out their normal life span. They were otherwise very healthy. No other issues. We all had a similar problem that we dont usually run a temp. If we should..its very low grade. Which means Docs dont think you are sick! My mom would actually get pneumonia all the time. No temp. A year or so before she died, she was in the hospital actually dying. Her Minister came in and prayed over her..she had lost continence and her awful Doc that I hated had resigned that she was dying. I was crazy!!! I tried to get that Doc to listen to me that she needed an antibiotic.
No way. I had to make a lot of noise and demanded a Pulmonologist to examine her. I told him that we dont run temps..she gets pneumonia with no temp. I got nasty looks..but they grudgingly took her for an xray. Short time later they come in..Doc looks at me and said she had pneumonia..puts her on IV antibiotics. By the end of the day she was back talking and laughing.
This is definitely an immune problem!! My Mom lived in Central Florida, I'm in Alabama so I wasn't close enough to fight people every day. Also, she had married a horrible man after my Dad died from lung cancer. He controlled everything and was sick of her..she couldnt cook anymore and was always sick. He insisted she see this bad Doc. She lived with constant stress with him, and developed anxiety. The doc put her on adavan or something that wacked her out. She lost her appetite and just wanted to sleep. That was the end. No food..heavy drugs. I questioned her husband what drugs she was taking and got hell for it. Next I knew she was going into hospice. We rushed there and 3 days later she was gone. I've never been able to shake the feeling that she was "put down" . There's even more awful stuff that I dont have time to go into, but that was how she died. She should have lived a lot longer..

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@gaylewoc, That sounds tragic about your mom. What a heartbreak for you to see her going down and having your hands tied as to trying to help her.

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@gaylewroc

@windwalker one more thing about my Mom..before she remarried, she had a Pulmonologist!!! who diagnosed her with copd and fibrotic lung disease. She had also had part of a lobe removed because she had been coughing so hard she ruptured and was hemmoraging. She had to be transfused.

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@gaylewroc, I am sending you a PM, so please check your mailbox.

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Wow Terri! I just saw this post..missed it!!! I'm so sorry to hear your struggle! I also have a few things in common with you! My husband and I are in the middle of getting our house ready to sell..and build a smaller retirement home. Part of constant stress to me is all the things I need or wanted to do in this house have gone by the wayside because I'm sick all the time. My husband still works full time and is not really good at keeping up with things. He can fix all sorts of things..but not house stuff..that was always my job. I would paint, lay tile ,do the flowers and shrubs outside. I'm just going to be so happy to get out of here! We have a travel trailer that wrre going to put on our land and live there while we renovate and sell. Then we can build.
I've always been an artist, and that's been put back too. Jewelry is another love, but I plan on trying to do it. At least I can sit!! Only problem is when the brain is exhausted!
Were hoping to have a garden also but we have to keep it simple. Have you tried Amikacin???

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I have been on Arikayce for 4-5 weeks. My doc decreased my use to every other day due to my severe loss of voice, as I am a psychotherapist and most definitely need the voice! I lost the voice for the first 3 weeks, then it came back for 1 week. Now gone again. Other than that, I have no side effects. I am taking a great probiotic, after trying several brands (Jarro dophilus). I also have been taking NAC after seeing others who have success regaining energy, as well as other potential benefits. In addition to Arikayce I take Ethambutol and Azithromycin. I could not tolerate Rifampin.

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Hi @angiejohnson Hi Try to find Strepfen, they are great, I think you can get them online, and rinse your mouth out after nebulising, hope it helps.

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@heathert

Hi @angiejohnson Hi Try to find Strepfen, they are great, I think you can get them online, and rinse your mouth out after nebulising, hope it helps.

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Thank you for the referral! I’m not sure if I can get it in the US, but I will certainly look into it!

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@angiejohnson

I have been on Arikayce for 4-5 weeks. My doc decreased my use to every other day due to my severe loss of voice, as I am a psychotherapist and most definitely need the voice! I lost the voice for the first 3 weeks, then it came back for 1 week. Now gone again. Other than that, I have no side effects. I am taking a great probiotic, after trying several brands (Jarro dophilus). I also have been taking NAC after seeing others who have success regaining energy, as well as other potential benefits. In addition to Arikayce I take Ethambutol and Azithromycin. I could not tolerate Rifampin.

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I just started the Amikacin and my nurse advised me to do my treatments at night before bed. That way the vocal chords are rested for several hours vs doing treatment in morning then talking all day. She also suggested to gargle and rinse with warm water to remove the residue of the medicine from throat and vocal chords as it becomes sticky.

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@suzyqueue

I just started the Amikacin and my nurse advised me to do my treatments at night before bed. That way the vocal chords are rested for several hours vs doing treatment in morning then talking all day. She also suggested to gargle and rinse with warm water to remove the residue of the medicine from throat and vocal chords as it becomes sticky.

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Thank you!!! I will try this.

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