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Does anyone know about Arikayce
MAC & Bronchiectasis | Last Active: Apr 19 11:09am | Replies (18)Comment receiving replies
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.
Replies to "I have been on Arikayce going on my 3rd year. The bacteria continues to come back..."
@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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@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!