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

Posted by gaylewroc @gaylewroc, Mon, Feb 4 4:32pm

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.

@windwalker

@gaylewroc, Gosh girl, you've got the 1,2,3 punch – Lupus, fibro, and MAC. I feel for you, I know that is rough. Having no energy SUCKS!! I am right there with you on that. I am on prednisone right now to see if I can pump myself up. I was doing pretty good for awhile there. The pines are sending out lots of pollen right now, so I am hoping it is allergies that have me so tired and short-winded. I have quit and packed up my two favorite hobbies (painting and jewelry design) Seeing my supplies and not having energy to do them just made me feel worse. We are completing/building a one story apartment to move into (a major downsize) because I am overwhelmed trying to take care of our house. It is two story, and I know I must do at least 50 trips up & down the stairs per day.I have to sit and rest with each trip to catch my breath. I can't tell if it is good exercise, or if it is killing me! LOL! All I know is, I am ready for an easier life.

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@windwalker @

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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.

Liked by gaylewroc

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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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@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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@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.

Jump to this post

@angiejohnson Hi there. I have been curious about using NAC also. May have to look into that again. Thanks!

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@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???

Jump to this post

@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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@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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