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

@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?

Jump to this post

OMGosh. Yes. I actually have been sick enough to find out before. Horrific.

REPLY
@heathert

@gaylewroc Its a piece of cake, let me know when you start and I can give you some tips. The big three start off hard but get better, I have been on them around 4 years now, dont really know why.

Jump to this post

@heathert FYI, stay the course. My Mayo doctor said he has seen some patients totally get rid of mac after being on the meds 10 yrs. I know that 10 yrs sounds dreadful, but I have been on mine (tho, not the Big 3) since 2013.

Liked by heathert

REPLY
@gaylewroc

@beatitnow , my infection has never been gone..I took the triple drug therapy for over 2 years. I am asking about Amikacin because that's the only drug I haven't tried. My scan as of almost 2 weeks ago shows disease progression, and active infection so I'm looking for further treatment.

Jump to this post

@gaylewroc Hi Gayle. Your situation sounds frustrating. Kudos to you for staying in the fight, I mean it. Don't ever give up, keep trying different things. Are you also taking measures not to repeatedly expose yourself where you think you might be? i.e. hot tubs, swimming pools, or in your own shower? Gardening? May I ask what part of the country you live?

Liked by heathert

REPLY
@windwalker

@heathert FYI, stay the course. My Mayo doctor said he has seen some patients totally get rid of mac after being on the meds 10 yrs. I know that 10 yrs sounds dreadful, but I have been on mine (tho, not the Big 3) since 2013.

Jump to this post

@windwalker Yes I guess, scary thought tho.

REPLY
@windwalker

@gaylewroc Hi Gayle. Your situation sounds frustrating. Kudos to you for staying in the fight, I mean it. Don't ever give up, keep trying different things. Are you also taking measures not to repeatedly expose yourself where you think you might be? i.e. hot tubs, swimming pools, or in your own shower? Gardening? May I ask what part of the country you live?

Jump to this post

@windwalker Hi Terri! Good question…AKA Hot tub lung!! I haven't been in a hot tub since the 70's!! I live in Alabama, and I moved here from Florida and I know Florida is a hot spot. I have a familial history of Bronchiectasis…my mother and her twin sister both had it…and I believe they had a MAC infection also by the way they wasted away. Both died in their early 80"s and had Doc's that didn't know what they had. We all could have gotten in in Florida from a shower..we lived in the same town. I do garden here in Alabama. I wear a mask now, and try to remember to soak my shower head in vinegar. I had a flare a year ago when I joined a Rec/Rehab facility and spent about 45 minutes in a therapy pool. It was like heaven and I didn't want to get out.(it was like a hot tub).after that I flared pretty bad. I learned I can't even go near the lap pool!!! I have some other problems that make it hard. I also have Lupus which includes Fibro etc. and some heart valve issues..Fatigue is huge problem, and sometimes I don't know if Lupus is flaring or my infection. The Doc's don't know either.

I've basically been in bed since Christmas. I had my immediate family, 4 kids, 5 grand kids and spouses and fell into bed the minute they left. I was taking prednisone to get through the holiday. My Doctor's do not know how to treat this disease and I am over it!! That's when I checked into Mayo clinic because were not that far. After joining this group I found a recommendation for a Doc in Atlanta at Emory. That's only 2.5 hours away and my Daughter lives in Atlanta…so win-win.. Thankfully they are getting me in next month and I am really hoping for a better outcome. I will go wherever I need to go to get a life!!

REPLY
@gaylewroc

@windwalker Hi Terri! Good question…AKA Hot tub lung!! I haven't been in a hot tub since the 70's!! I live in Alabama, and I moved here from Florida and I know Florida is a hot spot. I have a familial history of Bronchiectasis…my mother and her twin sister both had it…and I believe they had a MAC infection also by the way they wasted away. Both died in their early 80"s and had Doc's that didn't know what they had. We all could have gotten in in Florida from a shower..we lived in the same town. I do garden here in Alabama. I wear a mask now, and try to remember to soak my shower head in vinegar. I had a flare a year ago when I joined a Rec/Rehab facility and spent about 45 minutes in a therapy pool. It was like heaven and I didn't want to get out.(it was like a hot tub).after that I flared pretty bad. I learned I can't even go near the lap pool!!! I have some other problems that make it hard. I also have Lupus which includes Fibro etc. and some heart valve issues..Fatigue is huge problem, and sometimes I don't know if Lupus is flaring or my infection. The Doc's don't know either.

I've basically been in bed since Christmas. I had my immediate family, 4 kids, 5 grand kids and spouses and fell into bed the minute they left. I was taking prednisone to get through the holiday. My Doctor's do not know how to treat this disease and I am over it!! That's when I checked into Mayo clinic because were not that far. After joining this group I found a recommendation for a Doc in Atlanta at Emory. That's only 2.5 hours away and my Daughter lives in Atlanta…so win-win.. Thankfully they are getting me in next month and I am really hoping for a better outcome. I will go wherever I need to go to get a life!!

Jump to this post

@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.

Liked by gaylewroc

REPLY
@gaylewroc

@windwalker Hi Terri! Good question…AKA Hot tub lung!! I haven't been in a hot tub since the 70's!! I live in Alabama, and I moved here from Florida and I know Florida is a hot spot. I have a familial history of Bronchiectasis…my mother and her twin sister both had it…and I believe they had a MAC infection also by the way they wasted away. Both died in their early 80"s and had Doc's that didn't know what they had. We all could have gotten in in Florida from a shower..we lived in the same town. I do garden here in Alabama. I wear a mask now, and try to remember to soak my shower head in vinegar. I had a flare a year ago when I joined a Rec/Rehab facility and spent about 45 minutes in a therapy pool. It was like heaven and I didn't want to get out.(it was like a hot tub).after that I flared pretty bad. I learned I can't even go near the lap pool!!! I have some other problems that make it hard. I also have Lupus which includes Fibro etc. and some heart valve issues..Fatigue is huge problem, and sometimes I don't know if Lupus is flaring or my infection. The Doc's don't know either.

I've basically been in bed since Christmas. I had my immediate family, 4 kids, 5 grand kids and spouses and fell into bed the minute they left. I was taking prednisone to get through the holiday. My Doctor's do not know how to treat this disease and I am over it!! That's when I checked into Mayo clinic because were not that far. After joining this group I found a recommendation for a Doc in Atlanta at Emory. That's only 2.5 hours away and my Daughter lives in Atlanta…so win-win.. Thankfully they are getting me in next month and I am really hoping for a better outcome. I will go wherever I need to go to get a life!!

Jump to this post

@gaylewroc I have a strong feeling that my mother had mac also. She had Alpha-1, which is a life-threatening disease along with emphysema. She passed away at the age of 58 in 1991. Back then, the medical professions didn't know much about Alpha-1 or mac. So she was never properly treated. She coughed non-stop and was not put on any kind of long term antibiotics, or very many short-term ones either. I do believe our bronchiectasis is very inheritable. pretty sure I got my crappy lungs from her. Did your mom and her sister live out a natural life span? Did your mom constantly get lung infections with her bronchiectasis?

REPLY

@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..

Liked by Jennifer

REPLY

@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.

REPLY
@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..

Jump to this post

@gaylewroc I know how you feel I had to fight for my mum also when the drs diddnt believe me , she had terrible depression and went down very hill fast, (they thought it was her heart, she was nearly gone)but when they finally gave her depression meds she ate again could go home and live a normal life for a few years before her heart illness took over, horrible, everything was a fight before she passed. So glad mum and dad had a few more years together.

Liked by Jennifer, gaylewroc

REPLY

@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!!

Liked by heathert

REPLY

@gaylewroc I feel for you.

Liked by gaylewroc

REPLY
@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..

Jump to this post

@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.

Liked by gaylewroc

REPLY
@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.

Jump to this post

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

Liked by gaylewroc

REPLY
@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.

Jump to this post

@windwalker

REPLY
Please login or register to post a reply.