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Does anyone know about Arikayce

Posted by lilbit59 @lilbit59, Jul 24, 2025

My doctor is changing my meds ethembutal to Arikayce. Is anyone else on this med.

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bayarea58 | @bayarea58 | Apr 16 3:51pm
In reply to @culady70 "I have been on Arikayce going on my 3rd year. The bacteria continues to come back..." + (show)
Profile picture for culady70 @culady70

I have been on Arikayce going on my 3rd year. The bacteria continues to come back and my lungs are not clear as of yet. I have lost my hearing to tinnitus which will never go away according to what I have read, my throat continues to be sore most of the time and dry, weight loss, sputum continues, skin itching, bone and muscle pain and fatigue. The doctor still wants me to continue the treatment unless I test negative more then 2 or 3 times. So far it has come back negative 1 time. I am hoping that I will be able to stop the treatment soon but not sure if all the side effects will go away. The tinnitus won't and have tried several hearing aids but don't seem to help.

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@culady70 3 years on Arikayce with no result is a long time. Is your doctor a NTM specialist? If I were you I would want an opinion from an NTM specialist on your current treatment plan and whether there is something else to try, whether it makes sense to continue Arikayce, etc. As you point out, these antibiotics are not without risks, so we all really need to be doing a cost v benefit analysis regarding our specific treatment regimens. Good luck!

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lilbit59 | @lilbit59 | Apr 16 4:24pm
In reply to @bayarea58 "@culady70 3 years on Arikayce with no result is a long time. Is your doctor a..." + (show)
Profile picture for bayarea58 @bayarea58

@culady70 3 years on Arikayce with no result is a long time. Is your doctor a NTM specialist? If I were you I would want an opinion from an NTM specialist on your current treatment plan and whether there is something else to try, whether it makes sense to continue Arikayce, etc. As you point out, these antibiotics are not without risks, so we all really need to be doing a cost v benefit analysis regarding our specific treatment regimens. Good luck!

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@bayarea58

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lilbit59 | @lilbit59 | Apr 16 4:27pm

I was on it for a week and started to cough up blood. I have had reactions to every med they put me on. I'm no longer talking anything for my Mac. I hope you the best of luck with your treatment.

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Sue, Volunteer Mentor | @sueinmn | Apr 16 6:15pm
In reply to @culady70 "I have been on Arikayce going on my 3rd year. The bacteria continues to come back..." + (show)
Profile picture for culady70 @culady70

I have been on Arikayce going on my 3rd year. The bacteria continues to come back and my lungs are not clear as of yet. I have lost my hearing to tinnitus which will never go away according to what I have read, my throat continues to be sore most of the time and dry, weight loss, sputum continues, skin itching, bone and muscle pain and fatigue. The doctor still wants me to continue the treatment unless I test negative more then 2 or 3 times. So far it has come back negative 1 time. I am hoping that I will be able to stop the treatment soon but not sure if all the side effects will go away. The tinnitus won't and have tried several hearing aids but don't seem to help.

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@culady70 What medications are you taking with the Arikayce? It is seldom prescribed alone. Also, are you doing daily airway clearance and using 7% saline nebs to help clear your lungs?

I agree with @bayarea58 that perhaps it is time to find someone who specializes in treating this infection. You can find a list of places that specialize here:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/

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westcottkm3040 | @westcottkm3040 | Apr 17 8:30am

I had some hearing loss due to this drug and discontinued it immediately. It is audio toxic.
I have some tinnitus and moderate hearing loss. But hearing aids help.
I did feel like it was working but was not willing to stay on it.
There are lots of other options. I’m surprised your doc want you to stay on it.
I’m on the big 3 plus clofazimine and seems to be working.

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reneemc | @reneemc | Apr 17 3:47pm

I was on Arikayce for 2 years. Had 11 consecutive negative sputum cultures, then back to positive. Currently on my second PICC line with Omadacycline and Amikacin, oral Azithromycin Clofazimine. Ethambutol and Rifampin. I will go back on Arikayce in a few weeks. Testing shows susceptible to all these medications

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dorothyjeansimpson | @dorothyjeansimpson | Apr 18 7:46pm
In reply to @reneemc "I was on Arikayce for 2 years. Had 11 consecutive negative sputum cultures, then back to..." + (show)
Profile picture for reneemc @reneemc

I was on Arikayce for 2 years. Had 11 consecutive negative sputum cultures, then back to positive. Currently on my second PICC line with Omadacycline and Amikacin, oral Azithromycin Clofazimine. Ethambutol and Rifampin. I will go back on Arikayce in a few weeks. Testing shows susceptible to all these medications

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How does your body handle that many drugs?

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bayarea58 | @bayarea58 | Apr 19 11:09am
In reply to @reneemc "I was on Arikayce for 2 years. Had 11 consecutive negative sputum cultures, then back to..." + (show)
Profile picture for reneemc @reneemc

I was on Arikayce for 2 years. Had 11 consecutive negative sputum cultures, then back to positive. Currently on my second PICC line with Omadacycline and Amikacin, oral Azithromycin Clofazimine. Ethambutol and Rifampin. I will go back on Arikayce in a few weeks. Testing shows susceptible to all these medications

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@reneemc I am on month 9 testing negative and can image the heartbreak and frustration you felt when you got that positive after 11 months of negative. Fingers crossed this new antibiotic “cocktail” is successful for you. Hope you are able to keep your spirits up despite the setback. I know it can be hard some days. 🙏❤️

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