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← Return to Starting Arikayce - nervous
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Hi Sounder, i hope you find this. I'm glad you were finally able to start Arikayce and I hope it works for you. I wrote a very long update on this thread Sept 3.. My last appointment was on August 14 and my wonderful doctor told me that my June sputum sample (I was bringing them in monthly) showed NO MAC GROWTH! Yay!!!! I had not started Arikayce yet so Azithromycin and Ethambutol killed it. However, that same sample showed many Pseudomonas, kleibsella and a fungus. I am doing Arikayce to kill them.
My lungs do not like anything nebulized and I couldn't do 3% and Arikayce. I stopped the 3% and do Arikayce 3x a week. I cough during the treatment and for an hour or more after so I'm sure I'm coughing up some of the Arikayce. It was going so well that I tried adding a 4th day but I had terrible breathing for several days and had to skip everything. I was told to bring a sample in two months and my appointment is this week. I hope I have a good report!.
Replies to "Hi Sounder, i hope you find this. I'm glad you were finally able to start Arikayce..."
@rits Hi Rita! I will be praying that you come back from your dr appt with a good report. I have had the pseudomonas before, it was a real drag. Klebsiella is typically a hospital borne bacteria; do you know where you might have picked that up? Please keep me posted on how you are doing.
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Rits. Hi there. Glad to hear from you and that’s wonderful news that you have no more Mac growth. I am 5 days in using the Arikayce and so far so good. I am hardly coughing at all and not coughing up anything to speak of. I am told to use the Arikayce every day. It is difficult to work and do all that prep and get ready and cook breakfast and lunch before I go to work. I am having a bit of trouble sleeping and have a slightly elevated heart rate. I am wondering if it’s from the medication. It doesn’t mention those side effects at all as being something to look out for. I see my doc on October 21st. And then again in December when we will do a sputum test. I had a baseline hearing and liver function test before I began the Arikayce and will have follow ups every month that I am on it. Let me know how you are progressing. Sending many blessings your way. Best, Candy