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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)
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@heathert

Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand does not have Arikayce since the trial and so it is not funded yet, Do you have to pay for it in Aussie. I would have to pay full price.

You only need 1 or even half a strepfen if you need it (husky voice or sore throat) mostly for the first few weeks and occasionally the first few months after the Arikayce nebulising. Also after nebulising rinse and gargle with water, that helps your throat also. I had Arikayce just before bed so I diddnt have to talk until the morning and strain my throat.

Sorry they interact with your other meds, I hope you can get it sorted out.

Any other Questions do not hesitate to ask.

Take care
Heather

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Replies to "Hi anniepie, that is great that you have managed to get Arikayce into Australia, New Zealand..."
heathert | @heathert | Jan 31, 2021

woops I forgot the @ in front of the anniepie. @anniepie on my post above, please see above for the heathert message to you..sorry about the confusion. Heather

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anniepie | @anniepie | Jan 31, 2021

Thanks @heathert -- very much.
Annie x

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anniepie | @anniepie | Feb 5, 2021

Hi Heather @heathert thaks so much -- I do have some other Arikayce questions.

No I'm not able to get Aricayce in Australia -- it hasn't been approved here yet or in many other places either yet. But I've recently been approved to be part of the international Arikayce trial, which is continuing over a longer period of time.

(My lung specialist is a co-author on this international trial's published articles -- Prof Rachel Thomson. They've already published the main efficacy results I think. It seems that this current part of the trial is the broader NTM patient testing phase).

I have to wait for the drug and the inhaler system to arrive here from the USA -- I think it has to be a PARI system

I think you were part of an earlier phase of the trial -- possible the main efficacy testing part.

Question: Did the Arikayce trial people supply you with your PARI e-flow rapid inhaler machine, or did you buy it yourself ? (I'm wondering if the trial people use a slower PARI system than the e-flow rapid). Your rapid system sounds much better to use.

Thanks very much for all your help
Annie x

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