Hi JEG, I know we have there community members who have had different experiences with this medication. I hope they chime in to let you know. Make sure you are monitoring any changes that you feel and keep it in front of your doctor if you do not feel well. No one know our bodies like we do. Let us know how you are feeling.

Hello Jeg,

I have not read of those symptoms as of yet. Have you had an EKG recently

Hi JEG, I also recently started on the ARIKAYCE drug 3 days ago. I was diagnosed with a rare strain more than a year ago and have been on a daily cocktail of antibiotics and now the MAC has spread to my right lung. Point being that I have been, over the months, feeling worsening in shortness of breath even from short walks.

I do not monitor my oxygen, or heart rate at home but I can tell you that my shortness of breath is more exaggerated and my heart-rate is up after my ARIKAYCE treatment. I'm not a rocket scientist but since the Amikacin is encapsulated in a type of "oil" to help it "stick" in your lungs, I'm guessing that it would make it a little more difficult to breath thus, also reducing oxygen exchange in the lung temporarily.

FYI, My "treatments" start first with a Albuterol Nebulizer treatment to open the airways which they say helps make the ARIKAYCE treatment more effective.

Hope that helps and I wish you well!!

Jeg,

Hello! Did your doctor give you parameters to report to him re: your heart rate and oxygen levels ?

I started Arikayce 3 1/2 months ago. First 2 months had sore throat, very hoarse voice and was much more tired than usual. All seem to be improving except for the hoarseness. It is manageable (I've tried all suggestions), but not ideal. Have to speak in low voice and gets worse through the day. I've considered a medication holiday (mainly to reassure myself that it will get better when I can stop using it), but since I finally got a negative MAC culture, I will keep using it and hope for the best. I guess I cannot completely attribute the negative culture to the Arikayce b/c I went from thrice weekly azith/etham/rifam to daily dosing and also started using the Afflovest at the same .... so who knows for sure which is/are responsible for the negative culture?

I feel very fortunate that my insurance pays for the Arikayce.

Hello! So glad that you have a negative culture and your health is moving in the right direction.

Yes, being on the treatments have their challenges but there is light at the end of the tunnel. Hopefully, you will feel stronger and deal with less side effects effects as time goes on.

Have you tried a small amount of natural honey, followed by a hot cup of water?

information on Arikayce Support Programs:https://www.arikayce.com/support-programs/