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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 15, 2019
In reply to @suzyqueue "I just started the Amikacin and my nurse advised me to do my treatments at night..." + (show)
@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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@angiejohnson that is good advice, try not to talk after treatment.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 17, 2019
In reply to @angiejohnson "I have been on Arikayce for 4-5 weeks. My doc decreased my use to every other..." + (show)
@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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@angiejohnson Hi there. I have been curious about using NAC also. May have to look into that again. Thanks!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 17, 2019
In reply to @gaylewroc "Wow Terri! I just saw this post..missed it!!! I'm so sorry to hear your struggle! I..." + (show)
@gaylewroc

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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@gaylewroc, It sounds like you and I have a lot in common. I wish we were neighbors; we would probably be good friends. I vowed to stop my hobbies, and I am for now; at least until I can get through this move. We are keeping the larger house for at least six months to see if we CAN live together in tighter quarters. If not, I am moving back into the bigger house and may build a master bedroom on the first floor. I plan to hold art classes in the larger home during that six months we are not living in it. I already have a growing group of ladies that want to attend. Of course, I will have to see what my energy level is. Right now, I am feeling great on prednisone. It is a wait and see kind of thing. Your plans sound exciting. Are you going to be up to the challenges of a building project? I just let my hubby do it all. He designed it and did all of the finish work. My job will be to design the walk-in closet, the garage organization and decorate the apt. It turned out adorable. I am looking forward to all rooms being on one level!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 17, 2019
In reply to @windwalker "@gaylewroc, It sounds like you and I have a lot in common. I wish we were..." + (show)
@windwalker

@gaylewroc, It sounds like you and I have a lot in common. I wish we were neighbors; we would probably be good friends. I vowed to stop my hobbies, and I am for now; at least until I can get through this move. We are keeping the larger house for at least six months to see if we CAN live together in tighter quarters. If not, I am moving back into the bigger house and may build a master bedroom on the first floor. I plan to hold art classes in the larger home during that six months we are not living in it. I already have a growing group of ladies that want to attend. Of course, I will have to see what my energy level is. Right now, I am feeling great on prednisone. It is a wait and see kind of thing. Your plans sound exciting. Are you going to be up to the challenges of a building project? I just let my hubby do it all. He designed it and did all of the finish work. My job will be to design the walk-in closet, the garage organization and decorate the apt. It turned out adorable. I am looking forward to all rooms being on one level!

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@gaylewroc Hi Gayle. No, I have not tried Amikacin yet. It wasn't approved yet back when I was testing positive for mac. I test negative now. If I ever test positive in the future; I would give it a chance provided the susceptibility test proves it will work on me. I hope it works for you.

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irene5 Irene Estes | @irene5 | Aug 2, 2020
In reply to @flib "My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone..." + (show)
@flib

My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone in some recent trials. Does anyone have information about nebulizing this drug? I have not been able to do the big three so it has been more than 10 years since I got MAC and just this year I am finally overwhelmed by it
Down to 88 lbs, lots of coughing and lots of fatigue. Let me know whatever you know about this drug. Greatly appreciated. Flib

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@flib Amikacin is an injected antibiotic. It is now in a liposomal inhaled form called Arikayce for retractable MAC ( those who have not responded well to at least 6 months of the Big 3. It is combined with two of the Big3. In other words, you have to be able to tolerate at least two of the Big3. It is in the clinical trial phase 3 and should be covered by insurance. If not there is a help for that with a program they tell you about, and you apply for it. There is a training session on how to use the Lamira nebulizer and the monthly medication vials come via Fed Ex in a refrigerated cooler which is picked up the next day. You will have an Arikayce support team which you can contact regarding symptoms etc.. You are never alone in the journey. I believe you will be on it daily for a year. It takes me about 45 minutes start to finish as everything has to be cleaned and sterilized afterwards so you are ready for the next day. I hope that answers your question. The short form is Amikacin is the same as Arikayce only one is injected and the other inhaled and gets right into your lungs giving those bacteria a good death blow! irene5

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Flib | @flib | Aug 2, 2020

My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone in some recent trials. Does anyone have information about nebulizing this drug? I have not been able to do the big three so it has been more than 10 years since I got MAC and just this year I am finally overwhelmed by it
Down to 88 lbs, lots of coughing and lots of fatigue. Let me know whatever you know about this drug. Greatly appreciated. Flib

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2, 2020
In reply to @flib "My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone..." + (show)
@flib

My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone in some recent trials. Does anyone have information about nebulizing this drug? I have not been able to do the big three so it has been more than 10 years since I got MAC and just this year I am finally overwhelmed by it
Down to 88 lbs, lots of coughing and lots of fatigue. Let me know whatever you know about this drug. Greatly appreciated. Flib

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Hi @flib, you'll notice that I moved your message to this recent and very informative discussion about amikacin. In addition to the information @irene5 provided, you can click VIEW & REPLY and scroll through the experiences shared by other members like @heathert @gaylewroc @suzyqueue @angiejohnson and more.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2020
In reply to @flib "My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone..." + (show)
@flib

My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone in some recent trials. Does anyone have information about nebulizing this drug? I have not been able to do the big three so it has been more than 10 years since I got MAC and just this year I am finally overwhelmed by it
Down to 88 lbs, lots of coughing and lots of fatigue. Let me know whatever you know about this drug. Greatly appreciated. Flib

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@flib, Hi there. It sounds like you are in dire need of something different for treatment. I would give the Arikayce a try. I am very worried about you. Sending you hugs.

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