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Anyone in the Encore Arikayce study?
Hello, I've posted a couple q's here & appreciate all the info!
I am now confirmed (2 Sputum samples) w/MAC. My pulmonologist, Dr Addrizzo-Harris at the NYU Medical Center bronchiectasis/NTM program, has given me the option of enrolling in the Encore Arikayce study. She is principal investigator. It's a multi-center study, is anyone else enrolled? Can you share experience? The protocols are pretty demanding but you definitely get closely monitored!
I am very inclined to do it on the 50% chance I can get Arikayce right away as it is shaping up to be much more effective at treating NTM. I am aware of the possible side effects and I've read some of the stories here ranging from bad side effects to none. In both arms of the study, whether I get Arikayce or placebo, they also treat with zithromycin (AZI) and Ethambutol (ETH). No rifampicin. They are testing replacing rifampicin with Arikayce and there is also some evidence that the 2 antibiotics instead of 3 are also effective (if I were to end up a placebo subject).
Very curious to get any comments or advice! Thank you all in advance!
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I already completed the study and it was great. I am so glad I did it. Not sure whether I had real or placebo Arikayce but I converted and have stayed negative. I lost my voice initially but then I adjusted and had no other side effects. I was very diligent about taking probiotics and drinking kefir. Let me know if you have other questions
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4 Reactions@thorne Thank you! I'm so glad to hear you had a positive experience. I'll come back to you if I have more questions!
Good luck in whatever you decide.
My doctor put me on 2 drugs MWF and said she preferred on stay on antibiotics then Arikase.
Thank you @mariegrace and @thorne, I am enrolling in the study... I will be on the 2 antibiotics + Arikayce 3x/week for a year. Won't be starting til a sputum sample I give tomorrow shows up positive so it will be a while. @thorne, did you know you had converted before the year or only after?
I was positive for MAC after dx of BE. Been stable for 5 years but now chest xray and CT worse so time for tx.
I was thinking about going to NYU but I like my pulmonologist at NYP Columbia Presbyterien Dr. Keating. Conferred with a friend and he said NYP program is fine.
Good luck fellow New Yorker. Keep in touch!
Weirdly, some study sites will tell you the results of your monthly study sputum and some do not. Mine did not so they would just take a separate sputum every few months and tell me the results of that. So I did know that I converted.
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1 ReactionAll best @mariegrace & everyone. I understand NYP is also excellent.
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1 ReactionHi there
I am also a patient of Dr. Addrizzo-Harris. I saw her for the first time last month. We were waiting to get my culture results back which have since confirmed that I do have MAC/MAI. She mentioned the study to me and said she'd recommend that I participate but I go back next month for a follow up to discuss and confirm treatment after I see a GI doc.
It's encouraging to hear that @thorne did ok on it. I didn't realize it was for a full year but I guess time flies..
Keep us posted on how you're doing! If I do end up enrolling in the study, I'll let you know.
@kdiago1564 Hi! Yes, let's keep each other up on anything new! If you decide to enroll, they have to collect a sputum sample on-site & then another one they have you collect a week or so later -- to confirm (once again!) that you are positive for MAC. Bunch of other screening too. I just did that this past Monday so won't know for certain til the sputum cultures which of course can take a while...
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3 ReactionsGreat to hear thay it did great on you. I was with the NTM team of Dr Addrizzo in NYU too. I am starting amikacin inhalation today. Are you on three times a week schedule? Is there any way we can prevent loss of voice or harshness? I heard rinsing with water or using honey to smooth throat. I am so happy for you for your conversion. I also have cavity but it has been stable for 2 years. Heard many positive stores about arikayce for cavity. I am positive on it!