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rits (@rits)

Starting Arikayce - nervous

MAC & Bronchiectasis | Last Active: Jan 22, 2020 | Replies (86)

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@beatitnow

@rits, how is your Amakicin going so far? How long have you been on it? Has your MAC/MAI cleared? Did you have side effects? I am going to be starting soon also. Thank you!

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Replies to "@rits, how is your Amakicin going so far? How long have you been on it? Has..."

Thanks for asking for an update. I started Arikayce on a Tuesday in July and all went well, just some coughing and more shortness of breath than my usual for a couple of hours. After Saturday's treatment (#5), I had extreme shortness of breath which didn't stop so I skipped Sunday and contacted my doctor on Monday. She said to stop until I was breathing better and we would take it from there. Pseudomonas and two other nasty bacteria had shown up in my June culture and my doctor said that Arikayce would take care of them as well as MAC.

It took about a month to get back to my normal no so great breathing. When I saw my doctor on August 14, she had amazing news for me. She said that the June culture showed no MAC growth for 9 weeks! OMG! That would be before I even started Arikayce. It's interesting that the June and July reports that I get through Mychart said MAC but she gets a lot more information with charts and other graphics that I can see on her computer screen. Also, she has a Fellow who was with us for the appointment and they were both beaming at me! And there might be a difference between Mychart which only says MAC and her report which say no MAC growth. in any case, Azithromycin and Ethmabutol (I couldn't tolerate Rifampin) worked for me in just a couple of months – started in March 3x per week! If only, I didn't have other organisms growing in my lungs!

She told me to resume the Arikayce but 3x a week, stop the saline which irritates my chronic bronchitis airways and she cut Azithromyin to 250 3x a week from 500, to ease the toilet problems I have (had colon cancer surgery almost 4 years ago and I'm missing almost a foot of colon, almost 2 feet of intestines and the valve between them – a story for another day -lol).

I'm doing the Azithro and Ethambutol on M/W/Fri so I decided to do the Arikayce on T/Th/Sat to attack the bacteria with something every day except Sunday. Everything went okay until this morning. I woke up with horrible thick constant mucus – like Lucy in the candy factory. It wouldn't stop even after I used the vest and Aerobika and had breakfast. The mucus is on my vocal cords as well and I have the croaky, laryngitis, wet deep voice like when I had a cold and it settled in my lungs.

But I haven't used Arikayce since Thursday so is that causing this? I don't think this is the same as the Arikayce loss of voice some of you had but please let me know if I'm going to lose my voice completely. I plan to continue the Arikayce today.

One more piece of news in this very long post (sorry). I just received the results of the August 14 sputum sample and there is no mention of the 3 bacteria that came up in the previous samples. To be honest, since I received the email in June telling me there was a new test result and I saw the pseudomonas, klebsiella pneumonia and cocci and bacilli in the report, my heart pounds each time I get an email telling me there is a new test result. I had a bronchoscopy on July 1 and there were 8 cultures from the lavage and biopsies. It is SCARY. But, I THINK the failure of mention of these nasties today is good news. (It says there is lots of MOLD!!!!! UGH)

Oh, one more thing. Amakicin is the antibiotic which prior to Arikayce reached MAC through an iv or by being inhaled with another drug – I think saline, maybe Albuterol. Arikayce combines Amakicin with liposome through a special nebulizer. Liposome causes the Amakicin particles to be so small that they can get through MAC's protective shell.

I hope you are able to take Arikayce with no trouble. It is the best drug available right now for NTM.

Rita