1. < MAC & Bronchiectasis

Mac question: Arikayce Inhaler Antibiotic

Posted by jr2366 (Jennifer) @jr2366, Dec 26, 2020

hi all I have a question does anyone know if the medication from arikayce made them sort of feeling little bit more congested and do you think in a few months from being on this inhaler antibiotic pain in the lung will get better in time. i'm only on it for about 9 days now. getting frustrated already I feel like crying I have no voice and not sure if it will come back. I feel like I'm holding back from going to see family sometimes because I can't even speak with hardly no voice. I'm going to call the pharmacist today about those lozenges called strepfen to see if its safe to try them. has anyone found there voice was much better from trying them? I definitely need my voice I'm getting so frustrated thanks to anyone who can help thank you so much.

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irene5 Irene Estes | @irene5 | Mar 1, 2021
In reply to @thumperguy "Joanne, I’ve no experience with Arikayce but I think there are participants on this forum who..." + (show)
@thumperguy

Joanne, I’ve no experience with Arikayce but I think there are participants on this forum who have. I’m confident you’ll be awash in information soon. Don

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@judyjo I have been on daily Arikayce since 6/8/2020. I am also on the Big 3. The hoarseness did go away for me. My throat is always sore after each treatment, but a nice bowl of Friendly’s vanilla bean ice cream helps me. Good luck. @irene5

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 1, 2021
In reply to @judyjo "HI, Has anyone been on Arikayce? I'm 3 months in plus on the big 3. I..." + (show)
@judyjo

HI,
Has anyone been on Arikayce? I'm 3 months in plus on the big 3. I have hoarseness that persists and one negative sputum. Did your hoarseness subside? How long were you on Arikayce and did it work long term? Thank you.

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I have never taken Arikayce, but here are discussions by some members who have: https://connect.mayoclinic.org/discussion/mac-question-1/ and https://connect.mayoclinic.org/discussion/any-good-results-from-taking-amikacin-and-what-were-side-effects/
Perhaps you will find a few answers and tips in their posts.
Sue

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heathert | @heathert | Mar 1, 2021

@judyjo Hi Joanne, I was on Arikayce for 1 year, a was always a little horse but nothing to really bother me, the strepfen were fantastic, I had half if I needed them. Also rinse your mouth out after nebulising with Arikayce and have it just before bed so you do not talk until the morning. I think it worked for me while I was on it, I may have to go back on it again soon and I would not hesitate. Take care Heather

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2 replies
joanne | @judyjo | Mar 1, 2021
In reply to @heathert "@judyjo Hi Joanne, I was on Arikayce for 1 year, a was always a little horse..." + (show)
@heathert

@judyjo Hi Joanne, I was on Arikayce for 1 year, a was always a little horse but nothing to really bother me, the strepfen were fantastic, I had half if I needed them. Also rinse your mouth out after nebulising with Arikayce and have it just before bed so you do not talk until the morning. I think it worked for me while I was on it, I may have to go back on it again soon and I would not hesitate. Take care Heather

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Thank you Heather. The hoarseness doesn't bother me that much but I'm a bit worried it won't subside after I stop the Arikayce. It also makes me cough pretty harshly and productively in the middle and at the end of the treatment. I'm beginning to think the cough is contributing to the hoarseness. I'll try your suggestions.

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2 replies
jr2366 (Jennifer) | @jr2366 | Mar 1, 2021
In reply to @sounder27 "jr2366. Hi Jennifer. I too had the hoarseness when I first began the Aricayce. At the..." + (show)
@sounder27

jr2366. Hi Jennifer. I too had the hoarseness when I first began the Aricayce. At the time I was working with the public designing kitchens during which I had to talk quite a bit to communicate with my clients. My pulmonologist and I decided to try the med application every other day and that worked well. Also I do not swallow during the inhalation process but rather use a tissue to expel saliva. I just concentrate on the inhalation. I do drink a large glass of water after the whole procedure is finished and I think that helps to clear the throat of anything that may have coated it during inhalation. This may all just be my way of coping but it seems to work for me. You may have to come up with your own methods and check with your pulmonologist.
On another note, when I first found out that I had Mac and bronchiectasis, I was terrified and depressed for quite awhile. I drew up a will and began cleaning out my basement and throwing out belongings that I no longer needed in anticipation of the worst. That was 5 years ago and now I’ve learned to live gracefully with this disease and finding this website and all these terrific people who also cope with their Mac journey has been so so helpful and at times comforting. Time will reveal that you are strong and resourceful too. I wish you only the best in the coming year. Candy

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Sorry for getting back so late but bring in Arikayce I feel the same I also have bronchiectasis I have been upset I’ve been in Arikayce now since this past dec I just feel like my life now is scary if you don’t mind me asking only cause I’m so new to all this I seem to try thinking positive through this all but with your bronchiectasis do you feel wheezing and do you have a hard time getting phlegm up before bed it keeps me up a lot my dr just gave me musinex and omeprazole for reflux last week the coughing seems little less how are you after 5 years what are you in now anything for the bronchiectasis and we’re you ever on anything? Just wondering I’m very nervous with all this I can’t help it thanks for any info I appreciate a lot

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jr2366 (Jennifer) | @jr2366 | Mar 1, 2021
In reply to @judyjo "Thank you Heather. The hoarseness doesn't bother me that much but I'm a bit worried it..." + (show)
@judyjo

Thank you Heather. The hoarseness doesn't bother me that much but I'm a bit worried it won't subside after I stop the Arikayce. It also makes me cough pretty harshly and productively in the middle and at the end of the treatment. I'm beginning to think the cough is contributing to the hoarseness. I'll try your suggestions.

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I cough the same after treatment with Arikayce but I do gargle afterwards they say it’s good for your throat I suck in lozenges also

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1 reply
thumperguy | @thumperguy | Mar 1, 2021

Jennifer, sorry you’re in the midst of a rough patch. Regrettably I have no familiarity Arikayce. Perhaps you can enjoy life a bit more right now by reminding yourself that these marvelous bodies we occupy have a remarkable ability to heal what ails. Try to let time do it’s magic. Don

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1 reply
bnthorson | @bnthorson | Mar 1, 2021

I am so sorry you are going through this! I took Amikaycin for 2 weeks but had to stop Because of side effects. I then started Arikayce two months later. I didn’t lose my voice but was very hoarse. Unfortunately had to stop it too. One strain of MAC I have is resistant to azithromycin. Yesterday I started Clofazimine. . So far so no side effects! Still on the Big 3 too.
Wishing you relief from the lost voice!

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1 reply
jr2366 (Jennifer) | @jr2366 | Mar 1, 2021
In reply to @thumperguy "Jennifer, sorry you’re in the midst of a rough patch. Regrettably I have no familiarity Arikayce...." + (show)
@thumperguy

Jennifer, sorry you’re in the midst of a rough patch. Regrettably I have no familiarity Arikayce. Perhaps you can enjoy life a bit more right now by reminding yourself that these marvelous bodies we occupy have a remarkable ability to heal what ails. Try to let time do it’s magic. Don

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Your so right time will heal I bet. I’m just a worry wart I guess but your very helpful thanks so much

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jr2366 (Jennifer) | @jr2366 | Mar 1, 2021
In reply to @heathert "@judyjo Hi Joanne, I was on Arikayce for 1 year, a was always a little horse..." + (show)
@heathert

@judyjo Hi Joanne, I was on Arikayce for 1 year, a was always a little horse but nothing to really bother me, the strepfen were fantastic, I had half if I needed them. Also rinse your mouth out after nebulising with Arikayce and have it just before bed so you do not talk until the morning. I think it worked for me while I was on it, I may have to go back on it again soon and I would not hesitate. Take care Heather

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Where did you buy strepfen? Thanks

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